Cornwall biker community unites to give brave 12-year-old Jozef Stasiak the perfect send-off

Cornwall biker community unites to give brave 12-year-old Jozef Stasiak the perfect send-off

It follows a plea from Jozef’s family for as many bikers as possible to join his funeral procession.

The biker community from Cornwall and beyond came out in force this morning to escort a courageous 12-year-old on his final journey. CornwallLive reported earlier this week how the family of Jozef Stasiak put a plea out for as many bikers in Cornwall as possible to ride with him to his funeral.

Jozef and his twin Jacob were born after fighting twin to twin transfusion and were very sick from birth. After a hard fight, their parents Heidi and Dom lost Jacob and now have lost Jozef too.

Jozef faced many complex medical needs throughout his life, from epilepsy to being tube-fed and not being able to see. Over the years he had so many operations the list is endless.

He passed away last week and the family, from Carnon Downs near Truro said they would love for as many bikers as possible to turn up to escort Jozef to his funeral at Budock Church near Falmouth on Christmas Eve.

This morning hundreds of bikers gathered at Carnon Downs and followed the hearse along the route. The spectacle was the perfect send-off to Jozef and was watching by huge crowds along the way.

Jozef’s coffin was transported in an adapted motorbike and side car and gathered bikers revved their engine in tribute to the inspirational young chap.

Everybody in attendance was in agreement that this was the perfect farewell to a brave young boy.

Christian Wicks-Lightfoot wrote on Facebook: “A massive thank you to everyone, all the riders attending, Falmouth football club, the Jennings run marshals, David Saunby and anyone who helped organise and run the day.

“Also a massive thank you to the public for turning out to see the ride and to those patiently waiting in traffic who’ve had there’s journey’s delayed but waited patiently for the procession to go. Warm love to Jozefs family I hope we all did you proud.”

Duane Shaky Bullocke added: “A very sad day, but a marvelous community spirit all pulling together from the fantastic bikers, Falmouth Town Football Club and CJ’s in Budock for the parking, and refreshments for the bikers. I can’t even begin to imagine what the family must be feeling today, but I hope they can take comfort from everyone who cared played a fantastic part. And a big Shout out to Batman, (Daniel) and Robin who lead the procession along the sea front. A massive thank you to Dave Saunby for the organisation of the bikers. God Bless you all.xx”

Jozef, who switched the Christmas lights on in Falmouth in 2019, also loved animals and his parents and siblings would smuggle their smaller pets in to see him in hospital despite it not being allowed, including a rabbit and on one occasion a litter of puppies.

 

Source: cornwalllive.com, Chris Matthews

Life with epilepsy does not have to be a death sentence

Life with epilepsy does not have to be a death sentence

Epilepsy: a word that brought great worry in the early part of 2019 and led me to believe my life was over.

Since the dreadful diagnosis I encouraged myself to thoroughly read and study to know exactly what Epilepsy is after having several bouts of anxiety attacks. I thought it came from dealing with a certain amount of tension at my job, but it became more severe.

I took it to heart when I began experiencing bizarre behavior and started seizing up in front of family members and one near-fatal episode was having an episode behind the wheel. While many thought I was having mental issues and to some point I was, it was a great thing that I was diagnosed and treated in the early stages.

By understanding my ailment, I began reaching out to organizations online such as the Epilepsy Foundation of America, which educates newly-diagnosed patients and offers a variety of resources to help aid this manageable disease. Epilepsy may occur because of a genetic disorder or an acquired brain injury, such as trauma, stroke, or aneurysm.

During a seizure, a person may experience abnormal behavior, unusual sensations, and loss of consciousness. There are few symptoms between seizures, such as uncontrollable jerking and shaking called a “fit,” losing awareness and staring blankly into space, tingling feelings in the arms or legs, and collapsing.

This neurological disease is in the same lineage as Alzheimer’s, Dementia, Multiple Sclerosis, Parkinson disease as well as many stroke patients. My recollection of how severe my condition got was faint as I was in a bed in the intensive care unit at DMC Hospital after having a grand mal seizure.

My mind began to travel back two years earlier as to how I came to be in this critical position and one of the unpleasant things I read about Epilepsy is that it tends to erase one’s memory and that is one thing that comes and goes. Before the grip of the disease got tighter, I was a newlywed, worked two jobs and was very active in my church.

As a result of my sudden decline of health, I ended up moving in with my parents, who eventually placed me in a nursing home temporarily because they felt that was the best choice for health and safety reasons then from the nursing home back to the hospital.

After I was discharged from the hospital in March of 2020, the world seemed strange to me; the rapid loss of memory weighed heavily on me to the point of embarrassment simply because I couldn’t recognize voices and faces, and I also loss a great amount of weight because I simply refused to eat. Soon after, I started reading and doing extensive research once more on Epilepsy and exactly what it is and how it affects a person.

My studies informed me greatly and I found that a few major entertainers such as the late singer-songwriter Prince and rap icon Lil Wayne had their fight with this dreadful disease. I learned empathy for all the men and women, boys, and girls whose lives were drastically changed because of this awful illness.

The team of doctors considered doing a procedure on my brain to see exactly where the seizures were coming from, and they explained to my parents that the outcome wasn’t going to be sure. To be fair and to interview every aspect for my better health, they went home and began to pray.

The doctors elected not to do the procedure and prescribed medication to keep me stable. The curse in living with this appalling ailment is just that—having to live with it, and the blessing in it is there are striking examples of famous people who are highly creative and gifted and took the disease and used it in a positive way. There are many organizations such as Ascension Health and the Epilepsy Foundation of America that can help with the diagnosis and management of the disease.

When an individual is facing a new diagnosis or experiencing ongoing seizures, there are many things to think about. There are thousands of doctors who can discuss both therapeutic and surgical treatment plans for people coping with Epilepsy and the prospects are getting better every day. There are teams of neurologists that are highly qualified and can provide patients with second opinions based on experience and are integrated with a national network of care.

Millions live with this condition undiagnosed, but to stay on track with regular doctor visits and being honest about any abnormal behavior or symptoms could greatly deter the illness from getting out of hand. For the millions of people who are dealing with Epilepsy, great comfort can be found in knowing that it is not a death sentence, help is available, and life indeed can still go on.

 

Source: macombdaily.com, Larry Gore Jr

 

New Port Richey girl with severe form of epilepsy, cerebral palsy gifted castle for Christmas

New Port Richey girl with severe form of epilepsy, cerebral palsy gifted castle for Christmas

When the Make-A-Wish Foundation asked six-year-old Kathryn Handford, of New Port Richey, what she wanted for Christmas, she said a castle. It was a challenging request, even for Make-A-Wish.

However, local construction company Team Farrell heard about the request and jumped in to make her wish come true. For three weeks, Steve Farrell and his team worked in his shop to make a large, wheelchair accessible castle to place on the Handford’s yard.

“I love giving back. The community has been very good to me, and I just love giving back,” said Farrell.

Handford has a rare epilepsy called Lennox-Gastaut syndrome. It’s incurable, incredibly hard to treat with medication and causes numerous seizures a day. She also has cerebral palsy.

“Kathryn is the happiest kid that you’d ever meet. She loves everybody, loves everything. She’s just the best!” said her mom, Alexis.

Hartford’s castle is complete with electricity, a digital fish tank, a keyboard, and a kitchen.

“I hope it really makes her Christmas, and she has many years to enjoy it,” said Farrell.

Alexis said one of her big goals now is to spread awareness about Lennox-Gastaut syndrome.

 

Source: fox13news.com

Study finds disease that children born to parents with diabetes may be more susceptible to than others

Study finds disease that children born to parents with diabetes may be more susceptible to than others

A new study shows that children born to parents with diabetes are more likely to develop autism and behavioral problems.

A study conducted by National Cheng Kung University Hospital in Taiwan and published in the journal Developmental Medicine & Child Neurology found an association between maternal diabetes during pregnancy and a number of neurodevelopmental disorders in children, including autism and attention deficit/hyperactivity disorder (ADHD). ) developmental delay, mental retardation, cerebral palsy and epilepsy.

The findings are based on hundreds of thousands of children whose mothers had either type 1 or type 2 diabetes or gestational diabetes.

Gestational diabetes is a chronic inflammatory disease that can affect the placenta, a round organ that supplies nutrients and oxygen to the fetus.

“These diseases can cause defects in the development of the nervous system,” said study co-author Professor Bao-Ling Kuo of Cheng Kung National University Hospital. They also change genes in newborn cord blood, which contains stem cells, the building blocks of the body.

“Together, these factors suggest that the risk of developing neurodevelopmental disorders in childhood increases with increasing severity of maternal diabetes,” said Professor Koh.

The research team followed 877,233 children born in Taiwan between 2004 and 2008 under the age of 12.

The impact of type 1 diabetes on neurodevelopmental disorders was the largest, followed by type 2 diabetes and then gestational diabetes.

Type 1 diabetes has been associated with an increased risk of stunting, mental retardation, and epilepsy in children. Type 2 diabetes has been associated with an increased risk of autism spectrum disorder, ADHD, developmental delay, mental retardation, cerebral palsy, and epilepsy.

Gestational diabetes has been associated with an increased risk of autism spectrum disorder, ADHD, and developmental delay.

Professor Koh said: “Given the significant burden of diabetes and some neurodevelopmental disorders worldwide, reducing their numbers in children born to mothers with diabetes is an unmet need. While various neurodevelopmental disorders may have the same underlying causes, including genetic and environmental factors, the mechanisms may contribute to different brain conditions.”

Previous research has shown that gestational diabetes increases the risk of heart disease in children.

The development of a child is a complex process, and any change in the mother’s body can have consequences for her child. Hormonal changes that occur during pregnancy can change a woman’s insulin sensitivity and lead to the development of gestational diabetes.

Diabetes of any type is usually accompanied by an inflammatory response of the immune system.

Inflammation has also been observed in the brains of autistic children, suggesting that this may be one of the links between the two conditions.

Professor Koh added: “More research is needed to explore how maternal diabetic conditions may affect brain development in the womb.”

 

Source: asumetech.com, Dianna Clary

Growing Up with Epilepsy: Rose’s Story

Growing Up with Epilepsy: Rose’s Story

Rose’s first seizure was on Valentine’s Day when she was 11 years old. That first seizure was a generalized tonic-clonic seizure. She was taken by ambulance to the hospital, where doctors ordered an EEG. Rose’s mom could tell by the expression on the EEG technologist’s face that something was wrong. Later that night, a call from the pediatrician confirmed that the EEG technologist had seen findings on Rose’s test that were consistent with seizure activity. The doctor recommended that Rose immediately start treatment with an anticonvulsant medication.

Medication Side Effects

The first medication the doctor prescribed made Rose throw up, so after only a week, she was switched to a different drug. The second drug provoked an allergic reaction that caused a skin rash, which is a known side effect of some seizure medications. Often the symptoms are mild and not harmful, but in some cases the rash can progress to a more severe immune reaction called Stevens-Johnson syndrome, which can require hospitalization or even be life threatening. Rose’s rash posed a potential threat to her health, so she was switched to a third medication.

While on the third medication, Rose’s parents, Kathy and Tim, noticed a decline in her academic performance. Rose also received a neuropsychological evaluation and her scores showed a significant enough decline from a previous test to worry her parents and the neuropsychologist. It was suspected that the new medication was affecting her ability to learn, so once again, the family opted to change the medication. The fourth medication had less of an adverse impact on Rose’s cognitive functioning, but her family wasn’t satisfied with the seizure control. Although Rose never had another generalized tonic-clonic seizure, she continued to experience upwards of 20 absence seizures per day, which impacted her learning and social interactions.

Rose explains, “It affected me in school. If I was taking a test, I could have a seizure during some part, and then I’d have to retrace, saying to myself, ‘OK, where am I? What am I doing?’ And then I’d have to start doing the problem that I was presented with all over again. And it affected me socially, because if I was talking to my friends, I could have a seizure, and then I could just completely lose track of what I was saying, and that could be a problem.”

Considering a Dietary Therapy

Because Rose had tried several medications without success, and because her seizures were still impacting her quality of life, her family decided to speak with her doctors about other treatment options. Initially, a dietary therapy called the ketogenic diet was recommended, but for this teenager and her busy family, it didn’t seem like a good fit. Both parents work full time, and Rose and her siblings have active schedules, so the planning and weighing of foods involved in the ketogenic diet felt too restrictive for them.

They chose instead to try a new dietary therapy, called the low glycemic index treatment (LGIT). The LGIT allows a more generous intake of carbohydrates than the ketogenic diet but is restricted to foods that are low in glycemic index, meaning foods that have a relatively low impact on blood glucose levels. For example, Rose cannot eat pasta, most breads, some tropical fruits, or candy because these foods raise blood glucose levels too high. Instead, she eats meats, cheeses, and most vegetables because these foods have a relatively low glycemic index. She doesn’t have to weigh her foods but instead must pay attention to portion size, balancing her intake of carbohydrates throughout the day with adequate amounts of fats and proteins.

The Challenges of a Restricted Diet

While the low glycemic index treatment is less restrictive than the ketogenic diet, the LGIT still has its challenges, especially for a teenager whose peers are loading up on candy bars and pizza. Although Rose is very motivated and receives a lot of support from family and friends, sometimes it can be tough for her to resist the temptation to indulge. When she sticks with the diet, she generally has about one seizure every two weeks. However, going off the diet and eating even a couple of cookies can trigger several seizures in one day.

The diet can also provide challenges to some family routines. Although this is not typical among families using the LGIT, Rose’s entire family tries to eat as much like Rose as possible so that food preparation time doesn’t involve making two different meals. That sometimes eliminates the easy or popular meal option, like their regular Tuesday night pizza dinners. Also, grocery shopping can be more time consuming and expensive, involving trips to multiple stores in search of specific low-carbohydrate items.

Kathy adds, “We started changing what we’d eat, and we started eating really healthy foods, which was positive and negative. Some of the kids really thought it was great, and others didn’t. They were really hurting for those carbs. My son usually has two meals; he has our meal and then his meal.”

The Tradeoff Is Worth It

In spite of the difficulties, the family agrees that the diet is well worth the carbohydrate sacrifice. Rose’s brother and sisters have found that they actually like some of the foods Rose eats, like natural peanut butter, low-carbohydrate pita bread, and a whipped cream and strawberry dessert.

The real benefit of the low glycemic index treatment is improved seizure control with fewer concerns about side effects. Rose now has more energy, and she worries less about seizures. She’s on the honor roll at school and hopes to study musical theater after graduation. She says she used to be anxious about having a seizure during a performance, but now she worries more about remembering her lines and dance steps.

Kathy says, “It’s just nice to see Rose again, because she was always in that fog. And just to see her again and see how she is—that dynamic personality sometimes was subdued, and it’s back. And I’m grateful.”

 

Source: massgeneral.org, MassGeneral Hospital for Children

 

Lanarkshire Epilepsy

Lanarkshire Epilepsy

Lanarkshire Epilepsy is a charity supporting those with epilepsy across North and South Lanarkshire, Scotland 

Help us to raise the funds to keep operating and continue supporting 500 people every year across North and South Lanarkshire!

Last year you all did an amazing job, helping us, along with extra funding from the National Emergencies Trust, to raise over £4,000 to keep Lanarkshire Epilepsy running.

Because of your efforts, we were able to provide specialist support, counselling, and activity groups to those with epilepsy across North and South Lanarkshire.

Summary

Nearly 1 in every 100 people live with epilepsy. This means that 5,000 people across North and South Lanarkshire live with epilepsy, for the past 11 year, have been and still are the only charity  providing frontline support to those with those people and their families. This support is totally free. Over the past year, we’ve still continued to try and provide support to those with epilepsy and their families as best we can, through counselling, activity groups, specialist advice, and days out.

What We Do

Despite those with epilepsy often being marginalised due to ignorance and fear surrounding the condition, we know that those with epilepsy can live full and active lives! We provide specialist support such as counselling, befriending, and opportunities for socialisation through family fun days, outdoor activities, support groups, and other evening events! We’ve recently started offering musical workshops too! These services are proven to best options in addressing the risks of depression, anxiety, and social isolation that so many those with epilepsy experience every day. We’re trying to reduce the ignorance around epilepsy, too, and have started offering epilepsy training to businesses and charities in the region.

Every year we support approximately 500 people. We want to make sure we can continue to support both these and all of those in need who live with this condition. Our work is supported by dedicated volunteers who are the backbone of Lanarkshire Epilepsy.

Our Story

We were formed as a charity in 2011, by Helen MacDonald. After being made redundant from her job with a leading epilepsy charity, she has made it her mission to meet the unmet need of those with epilepsy across North and South Lanarkshire, a blackspot with no other epilepsy charities operating.

In those eleven years, we’ve been making sure that those with epilepsy stay connected, get out and about, and  get specialist advice and support, including counselling. We’ve continued to support our clients during and since the pandemic in every way possible, despite the it being difficult to fundraise at the moment.

Our Plans

We want to make sure we can maintain the help and support we provide to people. With times as tough as they are, we’re putting a special focus on our counselling service.

Despite these plans, the most important thing is keeping the charity operating! Please help us to keep supporting the roughly 5,000 people across North and South Lanarkshire who live with epilepsy every day. Your help can make a real difference! Already with this, we have been able to transform peoples lives. We want to keep reaching out too, helping more and more people with this condition. YOU can help us to do this!

 

Source: crowdfunder.co.uk, Lanarkshire Epilepsy

Lauren’s Epilepsy Story

Lauren’s Epilepsy Story

Epilepsy Surgery Gives Toddler Active, Seizure-Free Life

In 2013, LaDonna and Luther Jenkins of Southfield, were joyful at the birth of their beautiful first-born daughter Lauren. Their baby girl was healthy and thriving.

When Lauren was about 17-months-old, however, there were a few signs that caused some concerns.

“Lauren started to have staring spells and it advanced to involuntary twitching followed by collapsing, which appeared as though she was having a seizure,” says LaDonna.

After taking Lauren to her primary care doctor and a local neurologist, tests revealed that there was a mass on her brain.

“We were terrified. Everything happened so fast and we did not know what to expect,” explains LaDonna.

The local neurologist suggested she be seen at the Children’s Hospital of Michigan. After evaluation from a team of specialists, tests revealed she had a mass on the upper-right side of the brain that was the probable cause of her seizures.

Surgery was recommended and performed by Sandeep Sood M.D., neurosurgeon on staff at the Children’s Hospital of Michigan, in November of 2014.

“Epileptic spasms are devastating to the normal development of the brain. While in many instances, we may not be able to localize the origin of the spasms, in Lauren’s case we were able to localize the seizures to the mass in the temporal lobe,” he says.

The surgery was a success and a biopsy revealed the mass was not malignant.

Lauren surprised the doctors and staff at how quickly she recovered.

“She came home from the hospital after only four days and is doing amazing,” LaDonna says.

She adds that other than the incision from the surgery, you would not know that Lauren had such a serious condition. She is a very happy child who loves to play catch and be active.

“This experience reminds us to truly pay attention to the development of your child. If you notice some abnormalities, do not hesitate to take your child to a doctor for an evaluation.   We are also so thankful to the staff and doctors at the Children’s Hospital of Michigan. They took the time to thoroughly explain what they were doing to treat Lauren and the care was outstanding. We are also thankful to God for allowing us to experience this and see the light at the end of the tunnel. It just makes family that much more important.” LaDonna says.

 

Source: childrensdmc.org

Castlegar woman plans California-to-Florida cycle for epilepsy

Castlegar woman plans California-to-Florida cycle for epilepsy

Castlegar’s Kelly Hall, a member of the Robson Fire Department, is about to set out on an epic journey to gather stories of people with epilepsy and to raise funds for a couple of epilepsy-related charities.

What are you going to be doing?
I’m going to be biking from California to Florida, from Big Sur to St. Augustine. And if I’m early, Key West.

What has prompted you to do that?
I had a friend who biked across Canada two summers ago for traumatic brain injuries. I was inspired by that and decided to do something similar, except I wanted to talk to people along the way about epilepsy, which is something I have. I was diagnosed when I was seven. So it’s quite a personal thing. I hope to create a series of short films and eventually maybe a documentary on the whole thing.

You’ve picked a much better route than cycling across Canada in January. But how did you decide on the start and end points?
It was exactly that. I, at the time at least, was a seasonal employee. So from December to April is usually my time off. That’s what I was focusing on. Where can I bike between January and April?

And you figure that’s how long it will take?
Yes, four months.

Are you going alone or is there any support vehicle with you?
I’ll have a support vehicle for the first day. After that I will be on my own.

Along the way, how will you connect with people with epilepsy?
A surprising number of people have epilepsy, so being out there talking to people, my hope is that some people will be like “Oh, I have epilepsy,” or “I have a friend who has epilepsy.” That said, there’s always the internet. I’ve been connecting with people who have epilepsy. At the very least I will be able to have phone conversations with some of these people. A lot of people are willing to talk.

You’re hoping to film some of them?
Yes, that’s definitely part of it. As well as all the triumphs and tribulations of me suffering!

I understand you feel there is still a lot of stigma around epilepsy to overcome.
I really do think that. I know a lot of people who have epilepsy who hide it. It’s a terrible thing to hear people are still suffering from the idea of being judged by their employers, their friends, even sometimes their families. I hear horror stories from people whose families don’t believe them, despite medical proof that they have epilepsy. There is a lot of stigma. You hear epilepsy and a lot of people think the worst. They think “Oh no, this person is going to fall down and shake.” There’s so many different kinds that that might not even be their form.

What has your own experience been like?
I had a really good support network growing up. I had friends who would be there for me when I had a seizure as a kid and very supportive family. Definitely I’ve suffered from some bad doctors and there have been a few employers along the way that have turned away when they learn I have epilepsy. Or they get scared. I have nocturnal epilepsy, so you’ll never see me have a seizure. But people hear the word and think of one thing. It puts a lot of weight on a life.

Have you done any long-distance cycling before?
I’ve done 100 kilometers in a day a few times. That’s going to be a lot of my days, over 100 kilometers.

But the actual itinerary will be based on whoever you’re meeting?
That’s a big part of it. It will be very much up in the air. I can’t expect people to put their lives on hold for an interview. That is a challenge I’ll be facing. Part of the itinerary is going to be meeting with people and being on time. So that could mean maybe no day of rest, just a day of more biking to meet up with someone. It’s very common complaint [of people with epilepsy] that they can’t drive. So I’ll bike over to your house and talk to you there. Definitely a challenge but I intend to get it done.

When do you begin?
I’ll be heading down to the States on Dec. 28 and getting on the bike on Jan. 1. Kind of a coincidence, but a very convenient one.

How long have you been planning this?
I’ve been thinking about it for two years.

But the stars just lined up now?
Yes. Just considering how I work and the job I do, winter was the best option.

Anything else you’d like to add?
I should add that along the way I’m trying to raise funds for the Centre for Epilepsy and Seizure Education in BC as well as the Defeating Epilepsy Foundation in the US. Anybody who knows anyone with epilepsy, or has experience with epilepsy, I would love to hear from you!

You can find Hall’s website at storytellingseizures.org and her fundraising pages at gofundme.com/storytellingseizures and gofundme.com/rideforepilepsy

 

Source: mykootenaynow.com, Greg Nesteroff

A social worker who helped others needs help after epilepsy diagnosis | Wish List

A social worker who helped others needs help after epilepsy diagnosis | Wish List

The Enquirer and United Way of Greater Cincinnati have joined forces for the 36th year to help families in need with the Wish List program. This is the seventh of eight stories that will appear this month.

The first seizure happened on a September morning last year. Rob Allen awoke next to his wife, Jamille Collins-Allen, whose body was thrashing violently. When she stopped shaking, he wasn’t sure she was breathing.

“I really thought I lost my wife,” said Rob, who is 39.

Jamille, 34, had experienced her first grand mal seizure, and it would not be her last. They have occurred irregularly, always without warning and always less than three months apart. More frequently, she experiences absence seizures, which cause her to blank out and stare into space.

Early this year, Jamille was diagnosed with epilepsy. The impact on Jamille, Rob, and their children – Jazmya, 16, and Michael, 12 – has been profound.

Before the diagnosis, Jamille’s career was devoted to helping people who struggle with addiction, young people in the juvenile court system, people who are homeless, people who are marginalized. She is a licensed chemical dependency counselor and a licensed social worker. She has a bachelor’s degree in psychology and a master’s in social work, both from the University of Cincinnati. The seizures began soon after she earned her master’s.

Jamille was the family’s primary breadwinner, and now her career is in jeopardy. She has not been cleared to drive. She has applied for jobs, “but once they find out about the epilepsy, it’s a no,” she said. And so, she worries. “If I’m disabled, will I never be able to achieve my goal of having my own private practice?”

Rob quit his full-time job as a security guard to care for Jamille. He started a home business making T-shirts, but that provides minimal income.

Since Jamille began taking medication that reduces the frequency of the seizures, Rob has taken on part-time maintenance work. While he’s away, a security camera in their home allows him to check on her. Still, “It’s nerve-wracking leaving her at home,” he said.

The couple looked forward to achieving financial stability after Jamille earned her master’s degree. Having outgrown their rental home, they were saving for a house of their own. Now, “It feels like that dream has been diminished,” Jamille said. “Our savings are gone, and we’re trying to maintain (solvency) while dealing with all this.”

The family was nominated for the Wish List by Ladies of Leadership, a mentoring organization for minority girls. Jazmya has benefited from the program, which is a United Way Black Empowerment Works grantee.

While saving for a down payment on a house, Jamille and Rob postponed many purchases. Their Wish List items include clothing, furniture (including beds and dressers), a washer and dryer and other appliances. Other requested items, such as a workbench, computer and pressure washer, will make it possible for Rob to earn extra money on weekends while someone stays with Jamille.

She still hopes to work again, possibly via virtual visits with clients.

“I’m used to being able to help people,” she said.

But now, it’s her family that needs help.

JAMILLE’S WISH: Clothing for the family, furniture (including beds and dressers), appliances, computer, workbench and pressure washer.

ESTIMATED COST: $5,000

How to help

Donations can be made online at www.uwgc.org/wishlist. You can also mail donations to: United Way of Greater Cincinnati, Attn: Wish List Pledge Processing, P.O. Box 632840, Cincinnati, OH 45263-2840. Please include “Wish List” in the memo line on checks.

 

Source: cincinnati.com, John Johnston

6 Things to Know About Epilepsy and Seizures

6 Things to Know About Epilepsy and Seizures

One in 26 people will have a seizure at some point in their lives. And some – around one or two out of 100 – will be diagnosed with epilepsy. Despite their prevalence, many people are misinformed about seizures and what to do if you or someone around you is experiencing one. “Seizures can be scary,” says neurologist Gabriel Martz, MD, medical director of the Ayer Neuroscience Institute Seizure and Epilepsy Clinic based in Enfield. “And there is a lot of confusion and myth about them. The more people know, the more they are prepared to get the right help if they experience a seizure, and to help others having seizures.” Here are six things you should know about seizures and epilepsy, according to Dr. Martz.

Seizures may look different than you expect.

Sometimes it’s hard to tell when a person is having a seizure. Most often, a person having a seizure may seem confused, stare into space, wander, make unusual movements, or be unable to answer questions or talk.

Seizures are classified into two groups.

There are two primary categories of seizures:

  • Generalized seizures affect both sides of the brain. These can be characterized by rapid blinking or a few seconds of staring into space. Other types of generalized seizures could cause people to cry out, lose consciousness, fall down, or have muscle jerks or spasms.
  • Focal seizures, or “partial seizures,” are located in just one area of the brain. These seizures might only affect a small part of the brain, and cause twitching or a change in sensation such as a strange taste or smell. A person might also become confused or dazed, and be unable to respond to questions or direction for a few minutes. A focal seizure could be followed by a generalized seizure, meaning that the seizure began in one part of the brain, but then spread to the other side as well.

Seizure first aid is easy to give.

Here are some easy steps to follow if someone is having a seizure:

  1. Stay with the person until the seizure ends and he or she is fully awake and responsive. After it ends, help the person sit in a safe place. Once they are alert and able to communicate, tell them what happened in very simple terms.
  2. Comfort the person and speak calmly.
  3. Check to see if the person is wearing a medical bracelet or other emergency information.
  4. Keep yourself and other people calm.
  5. Offer to call a taxi or another person to make sure the person gets home safely.
  6. Call 911 and take note of duration of seizure if the person has never had a seizure before.

People with epilepsy can live full lives.

Some may need to learn new ways to manage daily life however, with the right treatment, safety considerations and support most individuals can live a normal life despite their diagnosis.

Epilepsy has many different causes.

Some common causes include:

  • Traumatic brain injuries
  • Stroke
  • Infection. Certain infections (such as cysticercosis, the leading cause of epilepsy worldwide) can lead to epilepsy
  • Lack of oxygen during birth
  • Birth defects

Diagnosis is key.

As there are many causes of seizures and many types of epilepsy, the first step in getting control is making the right diagnosis. Epilepsy specialists at the Ayer Neuroscience Institute are trained to help diagnose and manage seizures. Using a full range of EEG and brain imaging tests (like MRI), our board-certified epileptologists are able to diagnose:

  • Seizure
  • Epilepsy
  • Fainting
  • Psychogenic event
  • Movement disorder
  • Sleep attack

What can be done?

Although seizure disorders have no cure, you can manage them with the right support. If you or a loved one has experienced a seizure for the first time, the Ayer Neuroscience Institute Comprehensive Epilepsy First Seizure Clinic can offer rapid and accurate diagnosis so that appropriate care can be started as soon as possible. Treatments may include medication, diet changes, surgical intervention and more.

 

Source: hartfordhealthcare.org

Lil Wayne’s History With Epilepsy Explained

Lil Wayne’s History With Epilepsy Explained

Grammy Award-winning rapper Lil Wayne has been regarded as an “elder statesman in the rap game” for more than a decade now, as XXL Mag highlighted. Born Dwayne Michael Carter Jr. on September 27, 1982, in New Orleans, Louisiana, Lil Wayne was living in abject poverty in one of NOLA’s most dangerous neighborhoods, Hollygrove, when he began rapping, which was sometime before he had turned eight (via Biography).

Within a few short years, “Weezy,” as you may think of him, was already performing and recording music professionally. (His first recorded performance was with rapper B.G. on “True Stories,” which dropped in 1993, the year Wayne turned 11.) None of that is to say, however, that in those days, young Lil Wayne was living anything close to a glamorous lifestyle.

He “dealt crack and once ac­cidentally shot himself in the chest,” Rolling Stone revealed in a 2008 profile of the rapper. Ten years later, he revealed to Billboard that it wasn’t exactly an accident; Wayne had been attempting suicide after his mother forbid him to continue rapping. In 2013, the artist also revealed he’d been diagnosed with epilepsy during his childhood (via NPR). Let’s take a look at Lil Wayne’s history with the neurological disorder.

Epilepsy is an umbrella term for all seizure disorders

Some might think of epilepsy as a form of seizure disorder, but it’s actually the umbrella term for all seizure disorders, according to the Epilepsy Foundation, which explains that a diagnosis of epilepsy will be made when someone experiences two unprovoked seizures not “caused by some known and reversible medical condition,” such as alcohol withdrawal. The word itself doesn’t speak to the cause of the seizures or their level of severity, both of which can vary significantly from person to person.

What a “seizure” refers to is an episode in which there is a “sudden surge of electrical activity in the brain,” according to UPMC. This can cause various temporary bodily symptoms and conditions, including dizziness and/or passing out, nausea, heart palpitations, bradycardia, hot flashes, headaches, vision or hearing loss, and visual or auditory hallucinations (via Epilepsy Foundation). A seizure may be the result of a brain injury or illness, or it may also be simply the result of a family tendency. In many cases, the cause of epilepsy remains elusive. And the symptoms that a particular seizure manifests can vary, even from seizure to seizure in one person.

That’s precisely how it is for Lil Wayne. Sometimes he may have a single seizure and then quickly recover (via USA Today). Other times, he’ll experience multiple seizures over a short period of time. Some of his seizures have been mild, but others, life-threatening (via Rap-Up).

Although Lil Wayne has had epilepsy since childhood, he didn’t know it was epilepsy until much later

Lil Wayne first began speaking publicly about his experience and history with epilepsy in 2013, despite that he had his first seizure as a young child (via Rap-Up). The reason was, as Wayne explained during an interview that year with Katie Couric, was a “lack of knowledge.” At the time, Wayne’s mother thought of the seizure as nothing more than a simple fainting spell. To Wayne’s knowledge, he didn’t have another seizure until he became an adult, although Wayne has stated that he is unaware of when he is having a seizure (via MTV).

It was only after Wayne was an adult seeking medical attention for seizures that Wayne came to recognize that his history with epilepsy went back at least as far as that very first fainting spell, which occurred when he was a very young child. This realization came about during a conversation Wayne had with his mother, during which he expressed his bafflement as to why he would be dealing with the “sudden” onset of epilepsy in adulthood. At that point, his mother reminded him about that “fainting spell,” and the two realized that the episode may have been Lil Wayne’s first in what would eventually become a long history of seizures.

Why it’s difficult for Lil Wayne and his medical team to keep accurate track of his seizures

Because Lil Wayne wakes up from his seizures having no recollection of the event, it not only makes it difficult to pinpoint exactly at what point in his childhood his seizures may have begun. It also means that if he were to have a seizure with no one there to observe it, such as in his sleep, he wouldn’t be able to report it to his medical team.

“I don’t know that it happens,” he told MTV’s “RapFix Live” in May 2013 after being treated and released for a seizure a month earlier. “I mean, it’s just a regular day. I go to sleep, I wake up in the hospital. I don’t feel anything. I don’t mind it, I just hope it stops happening.” According to the Epilepsy Society of the UK, it isn’t unusual for someone with epilepsy to experience memory deficits. “If you have lots of seizures, memory problems might happen more often,” the organization explained.

In fact, seizures, themselves can adversely affect memory, both in general and of the episode itself. Epilepsy that affects, or is caused by abnormalities in, the temporal lobe of the brain, is most commonly associated with memory loss. However, Lil Wayne has not publicized the specific details of his epilepsy.

Lil Wayne spent almost a week in the hospital in 2013

Prior to 2013, Lil Wayne had never publicly addressed his history with epilepsy. When he did finally did, it was only after being hospitalized for six days as a result of multiple seizures. When he went public, he chose to give his story first to DJ Felli Fel of hip-hop station, Power 106 (via Rap-Up).

“The bad news is I’m an epileptic. I’m prone to seizures. This isn’t my first, second, third, fourth, fifth, sixth, seventh seizure. I’ve had a bunch of seizures, ya’ll just never hear about them,” Wayne told Fel in the days after he returned home from his nearly-weeklong hospitalization. His stay included time in the intensive care unit (ICU) in connection with his seizures. Although Wayne hadn’t revealed his diagnosis publicly until then, those close to him likely knew. Wayne explained that his seizures were frequent enough that anyone who’s around him for any length of time eventually begins to “know what to do.”

TMZ reported at the time that Wayne was in critical condition. What made this particular seizure episode so worrisome is that after having three seizures in a row, his heart rate dropped down to “like 30%” he told Fel. In addition, Wayne was living in a Los Angeles neighborhood that made a trip to the hospital logistically challenging. “I live in the hills in L.A. … I live all the way at the top, so you know how hard it is getting down those hills. That was what was so scary about it.”

Lil Wayne experienced another seizure after being released from the hospital

Just weeks after an episode involving multiple seizures landed Lil Wayne in intensive care in March 2013, Lil Wayne experienced yet another seizure, according to TMZ. On April 30, 2013, Lil Wayne was taken to Cedars-Sinai Medical Center in Los Angeles after experiencing an isolated seizure. This one appears to have been less medically worrisome than the seizures Wayne had in March, however. Whereas Lil Wayne’s previous hospitalization had lasted for six days and involved multiple seizures, this time Lil Wayne was deemed to be in good enough shape to be released within 24 hours.

The next morning, the rapper reassured his fans, tweeting, “I’m fine. Thank u.” A few days later, Weezy again spoke publicly about his history of epilepsy with MTV News’ “RapFix Live,” revealing that his seizures are as shocking to him as they are to his fans (via USA Today). “I go to sleep and wake up in the hospital,” and while sometimes there’s a headache that might give him a clue as to the possibility that he may have a seizure, that was not the case this time. “The headaches? I didn’t get no headaches or nothing,” he explained.

You might recall older reports of Lil Wayne’s ‘seizure-like symptoms’

It wasn’t until March 2013 that Lil Wayne publicly divulged — for the first time ever — that he had been diagnosed with epilepsy. However, looking back, it appears that the first hints that Lil Wayne may have had a history with the neurological condition were visible in 2012. That was when it was first reported that Wayne had possibly experienced a seizure, although the word “epilepsy” was not mentioned at the time. Specifically, in October 2012, TMZ reported that a private jet transporting Lil Wayne had to make an emergency landing in Texas after the rapper experienced “seizure-like symptoms” mid-flight.

Wayne was briefly hospitalized for treatment. After leaving the hospital and getting back to the business of his day, Wayne experienced another seizure and was sent to another hospital, this time in Louisiana, according to a separate report by TMZ. Although a rep for Lil Wayne allegedly said that Wayne was dealing with was a migraine and dehydration, this wasn’t consistent with the pilot’s report and hospital accounts.

Lil Wayne experienced at least three seizures during summer 2016

In June 2016, Lil Wayne once again experienced a seizure while flying as a passenger on a small private plane. According to TMZ, Lil Wayne was on a cross-country flight that took off from Milwaukee, Wisconsin and was en route to California. Wayne’s plane never did land in California, however, because Wayne experienced a seizure somewhere over Nebraska. Wayne apparently lost consciousness as a result. The pilot made an emergency landing in order to get Wayne medical treatment before continuing on to California.

After the plane landed in Omaha, Nebraska, Wayne refused medical treatment. However, Wayne later confirmed that he’d had an epileptic seizure (via Hip Hop DX). Not more than an hour later, while flying out of Omaha, Lil Wayne had another seizure, forcing the plane to turn around and make an emergency landing back in Omaha. TMZ reported Wayne was then treated by paramedics on the aircraft.

Just one month later, Lil Wayne experienced another seizure — this time mere moments before he was due to take the stage at TAO nightclub in Las Vegas, Nevada during the second weekend of July, TMZ reported in 2016. This seizure was apparently more serious because not only did it lead to the cancellation of the show, but he also was reportedly hospitalized in the ICU.

Lil Wayne missed a show in Las Vegas in 2017 after having two seizures in Chicago

In September 2017, TMZ reported that Lil Wayne had been hospitalized again in connection with his epilepsy. “Multiple sources tell us Wayne was hospitalized Sunday in Chicago after he was found unconscious in his hotel room at the Westin on Michigan Avenue after suffering at least one seizure,” TMZ alleged. “He was rushed to Northwestern Memorial, where we’re told he suffered yet another seizure.” These incidents were confirmed by the Chicago Fire Department (via Chicago Tribune).

According to Variety, it appears Lil Wayne had left the hospital by Monday morning, which would tend to imply that this particular episode of seizures was not as serious as others he’d had in the past. Nevertheless, as a result of these two seizures, Lil Wayne was forced to cancel another show scheduled in Las Vegas, Nevada, this one at Drai’s Nightclub. Wayne’s medical team believed that it was too risky for Wayne to attempt to fly to Vegas, given that he had a history of experiencing seizures while traveling by air (via TMZ).

Did ‘sizzurp’ contribute to Lil Wayne’s propensity toward seizures?

Ever since the public first learned about Lil Wayne’s epilepsy diagnosis, there has been on-and-off speculation as to whether the star’s lifestyle might have contributed to his seizures (via MTV). Wayne acknowledged the rumors in a September 2013 interview with Katie Couric.

During the sitdown, Couric expressed concern to Wayne about his consumption of “sizzurp” (sometimes called “lean” or “double cupping”). Sizzurp is a liquid concoction containing codeine and soda (via Partnership to End Addiction). Wayne told Couric that he had stopped imbibing “the syrup,” as Couric referred to it. However, he opened up about the fact that he had been taking “pain pills” that contained codeine. “So the lack of drinking the codeine the way I did drink it … it was kind of like a reaction of you stopping the drug,” he explained.

According to Dr. Michael Privitera, a professor and the director of the Epilepsy Center at the University of Cincinnati Neuroscience Institute, told MTV that there are multiple reasons that can contribute to epilepsy, including genetics or taking codeine.

Lil Wayne said that he stopped using codeine at the advice of his doctors

A few months after Lil Wayne went public with his epilepsy diagnosis back in 2013, Katie Couric asked him if he was still using codeine. Lil Wayne replied that he “can’t” because the doctors told him it was off-limits due to his history with epilepsy. Since then, when Wayne has had seizures that the public has learned about, Wayne has attributed them to many things, including dehydration, stress, lack of sleep, and overworking (via Rap-Up) but he has never admitted to, and at times had denied, continuing to abuse codeine.

Still, some continue to speculate that Wayne’s seizures in recent years have been caused, or at least, exacerbated by his use of cough syrup, including TMZ, which in 2017 published a series of photos taken of Lil Wayne in which Wayne is hoisting a “double cup,” which is culturally associated with sizzurp (via TMZ). “Lil Wayne continues playing with fire by downing sizzurp, and there’s plenty of visual evidence he’s been doing it regularly for months leading up to his latest seizure,” TMZ alleged in the accompanying story.

That said, Lil Wayne holds no ill will against the site. “That’s what they do,” the rapper told DJ Felli Fel (via Rap-Up). “I can’t be upset at TMZ for doing what they do,” he continued.

Lil Wayne doesn’t always see his condition as a ‘life-changing thing’

Epilepsy is a serious neurological disorder, according to the Mayo Clinic. However, Lil Wayne hasn’t always been forthright about the seriousness of his condition. Wayne and his representatives have been known to post reassuring messages on Twitter after the media reports on a seizure episode. For example, in 2016, after he cancelled a Vegas show following a backstage seizure, Wayne tweeted the next day that this was nothing more than a “false alarm” (via Hip Hop DX).

“I appreciate da prayers and konsern, but I’m good,” he added. It may be that he doesn’t want his fan to worry about him, or that he wishes to circumvent any further discussion about his history with epilepsy. “I don’t mean to sound bad, but it wasn’t no life-changing thing,” he told the magazine Nylon-Guys in late 2014 regarding the seizures he had in 2013 that exposed his epilepsy to the public eye (via Rap-Up). “I shot myself when I was 12. I grew up in Hollygrove [in New Orleans, Louisiana]. I’ve seen way worse.”

However, the rapper did admit the seriousness of his seizures after his nearly week-long hospital stay in 2013. “Basically, I could’ve died, so that is why it was so serious,” he said (via Rap-Up).

Lil Wayne manages his epilepsy with medication

Lil Wayne seldom speaks publicly about the manner in which he and his medical team are managing his epilepsy. What we do know, however, is that after experiencing seizures in 2012 (which Wayne’s camp initially attributed to a migraine and dehydration), Wayne said that he “didn’t want to make a big deal about the whole thing,” but that his “recovery regimen includes seizure medication and plenty of water,” according to MTV. He also said that he was under doctors’ orders to drink “four bottles of water a day,” adding, “I ain’t drinking four water bottles, but everything’s good.”

The following year, when Weezy went public with his epilepsy diagnosis, he spoke about the advice his doctor had given him. “He didn’t tell me to do too much that a human, that we all don’t do anyway,” Lil Wayne said. “Sleep and eat right — that’s about it” (via MTV). And in 2020, he told a Florida judge that he was “taking daily medication for his epilepsy,” according to Tampa Bay Times.

As a celebrity with epilepsy, Lil Wayne is in esteemed company

If Lil Wayne is reluctant to share with the general public the details of his history with epilepsy, it may be because people with epilepsy can feel stigmatized by their condition, as reflected in a 2002 research paper published in the journal of Epilepsy & Behavior. “Though attitudes toward people with epilepsy have improved over the years, for many people with epilepsy, stigma continues to adversely impact their psychological well-being and quality of life,” the paper’s author wrote. “The stigma of epilepsy can be linked to a number of factors, including under-resourced medical services, poor seizure control, and inadequate knowledge of epilepsy.”

Nevertheless, Lil Wayne, who has gone out of his way to reassure his fans that his epilepsy will not interfere with his career, is in good company as there are a number of famous people who are known to have had epilepsy. For example, the 26th President of the U.S., Theodore Roosevelt, contended with epilepsy, according to Healthline. Sadly, Roosevelt felt compelled to downplay his condition as a result of the stigma attached.

The Academy Award-winning actor Danny Glover is another famous and much-admired person who has a history of epilepsy, which began when he was a child. So too is the celebrated singer-songwriter Neil Young, who also has a daughter with the condition. Young wrote about his epilepsy in his memoir, “Waging Heavy Peace” (via Healthline).

 

Source: healthdigest.com, Lauren Cahn

New Epilepsy Disorder & Genetic Cause Found

New Epilepsy Disorder & Genetic Cause Found

Neurodevelopmental disorders (NDD) encompass highly prevalent conditions such as autism and epilepsy, with cognitive disabilities alone affecting 1-3% of the global population. Developmental epileptic encephalopathies (DEE) are NDD characterized by epilepsy and delayed development or loss of developmental skills. Although the prevalence of DEEs remains to be determined, studies estimate that single-gene epilepsies occur in around 1 in 2100 births annually. A recent study from the laboratories of Dr. Hsiao-Tuan Chao, assistant professor at Baylor College of Medicine (BCM) and investigator at the Jan and Dan Duncan Neurological Research Institute (Duncan NRI) at Texas Children’s Hospital, and Dr. Pankaj Agrawal, professor at Harvard Medical School and Boston Children’s Hospital, identified alterations in the Eukaryotic Initiation Factor 4A2 (EIF4A2) gene as the cause of a novel DEE syndrome.

This new discovery, published in the American Journal of Human Genetics, provides the first experimental demonstration of a causative role of alterations impacting EIF4A2 in human disease.

Identifying individuals with a new neurodevelopmental disorder

The study involved an international collaboration that was made possible by a virtual tool called MatchMaker Exchange, which was launched in 2013 to serve as an integrated platform for clinicians and researchers all over the world to exchange phenotypic and genotypic data which greatly accelerates genomic discovery.

“Using this tool, Dr. Anna Duncan, an instructor in Dr. Agrawal’s lab and co-first author of the study, identified about 15 individuals from 14 families who had structural changes in the brain (as observed by MRI imaging) and similar clinical presentations comprising global developmental delays, poor muscle tone, speech impairments, and epilepsy,” Chao said. “They found these individuals carried extremely rare spontaneous mutations in one or both copies of EIF4A2.”

The EIF4A2 gene encodes an ATP-dependent RNA helicase, a protein that is involved in regulating the three-dimensional (3D) structure of a fundamental molecule, the ribonucleic acid (RNA). The EIF4A2 protein is expressed in all tissues and acts as a regulator of protein translation. It belongs to the DEAD-box family – a group of 50 closely-related proteins – many of which regulate protein translation, a fundamental molecular process by which messenger RNAs are converted to their corresponding proteins. Previous studies have implicated EIF4A2 as critical in brain development and its dysfunction has been associated with intellectual disability.

Using fruit flies to understand how mutations in elF4A cause this syndrome

To confirm if these gene variants are responsible for the neurological symptoms seen in these patients, co-first author, Dr. Maimuna Sali Paul, a postdoctoral fellow in the Chao lab, and Dr. Chao carefully examined human EIF4A2 variants and its fruit fly counterpart, elF4A, with which it shares significant sequence similarity.

They identified four variants of EIF4A2 that affected conserved residues in the fly gene eIF4A and were predicted by molecular modeling data to perturb the 3D structure of the human EIF4A and its interaction with the RNA. Dr. Paul found overexpression of these EIF4A2 variants in the fruit fly resulted in a variety of behavioral and developmental defects such as motor defects, and improper development of eyes, wings, and peripheral nervous system organs such as bristles, a clear indication of their toxicity.

Moreover, Dr. Paul leveraged the knowledge that complete loss of eIF4A was lethal at the fruit fly embryonic stages, whereas reducing its levels from specific tissues was lethal in either embryonic or pupal stages, to study the functional consequences of the human EIF4A2 variants. “Most importantly, when we overexpressed the wild-type human EIF4A in the eyes of the flies lacking this gene, we were able to completely ‘rescue’ the pupal lethality and restore the normal lifespan of these flies,” Dr. Paul said. “However, overexpression of one disease-causing variant resulted in a weak/partial rescue while the others were unable to rescue the lethality – a clear indication of the essential role they play during development.”

“Consistent with this study, our lab had previously found that loss of a kinase, EIF2AK2 which regulates downstream protein complexes involved in protein translation also causes similar neurological impairments,” Dr. Chao said. “Thus, our findings in this study underscore the critical role of balanced regulation of protein translation for brain development and maintenance of function in neurons and glia. These findings reveal EIF4A2 as a previously unrecognized cause of a novel developmental epilepsy syndrome.”

 

Source: miragenews.com

RNS for Epilepsy: Everything You Need to Know

RNS for Epilepsy: Everything You Need to Know

Responsive neurostimulation (RNS) is a treatment that may help manage epileptic seizures. Doctors may recommend RNS for epilepsy if medication has not been effective for you.  Doctors may initially use medication to treat epilepsy. However, for some people, medication does not completely stop seizures. This is known as intractable or refractory epilepsy. According to the National Institutes of Health (NIH), this occurs in up to 30–40% of people with epilepsy.

In such cases, other treatment options, such as RNS, may be effective.

This article discusses RNS for epilepsy, including how it works, its benefits, and its effectiveness. It also explains what to expect from the procedure, including costs, possible side effects, and additional care options.

How RNS for epilepsy works

Epileptic seizures are the result of abnormal or uncontrolled electrical activity in the brain. RNS treatment involves placing a battery-powered device called a neurostimulator in the skull that connects to thin leads inside the brain. This manages the brain’s electrical activity.

The neurostimulator does this by monitoring the brain’s electrical activity and responding when it detects abnormal patterns. It then produces short electrical pulses to manage the activity.

Benefits

RNS can be a beneficial treatment. Not only may it be effective at managing seizures, it can also have other advantages, such as:

  • Adjustable: This means your doctor can tailor the RNS settings to the needs of your individual condition.
  • Reversible: RNS implantation is reversible, which means the surgeons can remove the device if they think you do not need it.
  • Painless: After recovery from the surgery, a RNS device should not cause any pain or discomfort.
  • Safe: According to a 2018 study, RNS procedures are safe and well tolerated by people who have them.

Another benefit that RNS may offer is the ability to store the information from the device and learn more about your condition.

If you experience pain or a tingling sensation with RNS for epilepsy, contact your medical team promptly. They may help by adjusting your device.

Effectiveness

Research into the effectiveness of RNS for epilepsy is still ongoing.

However, a 2020 study suggests that RNS therapy effectiveness increased over time as clinicians have learned to optimize its use.

For example, the median rate of reduction of seizures improved from 67 to 74% over the first year of the study to the last follow-up. Additionally, around 35% of participants experienced at least a 90% reduction in seizures, with around 18% of people becoming seizure-free for long periods of time.

A 2020 review of research also suggests that RNS can reduce the risk of experiencing unexpected death due to epilepsy. It may also improve the quality of life and cognitive function of those with epilepsy.

Who may benefit from RNS

If you have epilepsy, your doctor will discuss the possible treatment for your condition and determine if you’re a suitable candidate for RNS. This is because RNS may not be effective for everyone.

The Food and Drug Administration (FDA) has approved RNS treatments for people over the age of 18 years who experience focal seizures due to refractory epilepsy. Focal seizures may also be known as partial seizures. Other candidates for RNS can include adults with seizures that start in two places of the brain, known as two seizure foci.

A neurologist may also recommend RNS therapy if clinicians believe that you would not benefit from brain resection surgery for epilepsy, and treatment with medication is not successful. This may occur if clinicians believe that other surgeries could be unsafe for you or the chances of other surgeries being effective are low.

What to expect from the procedure

If medication is not managing your seizures, your doctor may conduct further diagnostic tests to check if RNS may help you. This can involve imaging scans or EEG monitoring.

If RNS is recommended, you can then undergo surgery using a general anesthetic to place the device. Surgeons will place the neurostimulator just underneath the scalp, which will not be visible to anyone else.

You may then need to stay in the hospital for around 1–2 days while you recover.

After several weeks, you may also need to see your doctor for a follow-up exam. This allows the surgeon to check and program your device. Your medical team may ask you to record your seizures before and after surgery to help identify any improvement after the procedure.

The neurostimulator battery may last around 8 years.

Risks and side effects

Clinicians generally consider RNS to be safe and effective when performed in appropriate candidates.

However, all surgeries carry a risk of side effects and complications. For RNS surgery, these complications may include:

  • pain or swelling at the implant site
  • bleeding
  • slow healing
  • lack of improvement to seizures
  • changes to seizure symptoms
  • infection
  • tissue damage

Some people may experience pain or discomfort during and/or after the procedure. Discomfort may also occur while programming the device.

Cost

RNS procedures can be expensive. Total costs for the procedure and related care can vary, with some estimating that the average healthcare costs for any epilepsy surgery are between $40,000–60,000.

However, a 2021 model of costs suggests that long-term RNS may be cost effective and help save money when compared with using medications on their own. Researchers theorize that this may help save up to $46,596 in certain conditions.

Some insurance providers may cover costs of RNS for epilepsy. Contact your insurance provider to see if RNS therapy could be covered for you.

Living with an RNS implant

After the surgery, your doctor will provide you with a remote monitor and a special magnet. This can help you collect data from the RNS and review the information with your doctor.

To collect this data, the magnet must be swiped over where the RNS sits in the head. Your doctor may ask you to do this during a seizure to further help the doctor tailor the RNS settings to your condition.

The magnet can also temporarily stop the stimulation from the RNS implant. Contact your doctor for advice regarding when to stop the stimulation.

You will also have regular check-ups with your doctor or medical team to monitor how the device is working and update its settings if necessary.

Eventually, you may need to replace the battery in the RNS implant.

Certain medical procedures can interfere with an RNS device and may cause serious complications or be fatal. These procedures can include:

  • MRI
  • diathermy
  • electroconvulsive therapy
  • transcranial magnetic stimulation

Do not undergo any of these procedures. Always inform your medical team that you have an RNS implant while seeking any treatment.

Alternative treatment options

If RNS is not suitable or desirable for you, other treatment options may be available.

These treatment options can include:

  • vagus nerve stimulation and deep brain stimulation, which use similar nerve stimulation approaches
  • brain surgery
  • complementary therapies, such as ketogenic diets

Summary

RNS therapy can be an effective treatment for those with epilepsy who do not see improvements with medication therapy. To carry out the treatment, a surgeon will place an RNS implant in the skull. This implant can then help monitor and manage the electrical activity that causes epileptic seizures.

RNS for epilepsy can be effective and safe, with many people experiencing a decrease in seizure episodes. However, RNS therapy may not be suitable for everyone, and all surgeries can present a risk of complications.

Contact your doctor if you have questions about RNS for epilepsy or your current epilepsy treatment.

 

Source: healthgrades.com, Kristina Lavarone

Food And Epilepsy: Myths And Facts

Food And Epilepsy: Myths And Facts

There are lots of myths surrounding food and epilepsy. Read on to know what is true and what is false.

A balanced diet is a key to a healthy body and a sharp mind. This fact applies to all kids but becomes even more pertinent for a child with epilepsy. A healthy balanced diet ensures the delivery of all the essential nutrients and micronutrients in adequate quantities that are essential for optimal brain function.

Unfortunately, there are lots of myths surrounding food and epilepsy with the commonest one being that certain foods or spices can trigger seizures. Another myth we encounter is that certain foods can cure epilepsy. These associations are completely unproven, says Dr Pradnya Gadgil, Senior Consultant, Paediatric Neurology and Complex Epilepsy, NH SRCC Children’s Hospital, Mumbai, India.

Poor dietary habits can affect seizure control

Dr Gadgil, however, states that poor dietary habits can contribute to overall ill health as well as adversely affect seizure control. Listed below are a few poor dietary habits that is talking about:

  • Missing meals or irregular food intake
  • Excessive use of stimulants like tea, and coffee, excessive sugar intake, excess salt.
  • Excessive intake of foods containing artificial food colours, preservatives, additives.

Nutrient deficiencies can cause seizures

According to Dr Gadgil, sometimes nutrient deficiencies or imbalances cause seizures. She says, “It is important to recognise these as they are an easily treatable cause of seizures e.g. calcium deficiency in small babies with hypocalcemic seizures, low sugars in diabetic patients, etc. Rare conditions like biotin deficiency, pyridoxine deficiency, etc., secondary to genetic metabolic abnormalities are well-recognised causes of seizures.”

Foods that people with epilepsy should avoid

Some evidence suggests that certain foods especially caffeinated drinks and alcohol may react with anti-epileptic medications making them less effective, thereby increasing the chance of breakthrough seizures even in patients with well-controlled epilepsies, says Dr Gadgil.

Role of special diets in the treatment of epilepsy

This is another question often asked when it comes to the treatment of epilepsy, Dr Gadgil points out.

She adds, “The ketogenic diet and its variations have long been used effectively to control seizures. However, misunderstandings abound. Ideally, these diets should be started only at the advice of an epileptologist. The diet does not replace first- and second-line anti-seizure medications- in fact- they serve as an adjunct. The diet plans must be carefully designed by an expert dietitian. There has to be close surveillance of the side effects of the diets.”

In conclusion, Dr Gadgil says “following a healthy balanced diet and consuming other foods in moderation can help patients avoid the diet’s effect on seizures.”

 

Source: thehealthsite.com, Longjam Dineshwori

Mucosal Trauma During Seizures in Epileptic Patients

Mucosal Trauma During Seizures in Epileptic Patients

Seizures are probably what come to mind when someone mentions epilepsy. Seizures, which are a hallmark of this illness, frequently necessitate an epileptic visiting a dentist more frequently. People who have epilepsy can and ought to visit the dentist frequently.

Epilepsy is the most prevalent serious neurological illness. Due to the frequent tooth injuries caused by seizures and the adverse oral effects of particular anti-epileptic medicines (AEDs), people with epilepsy may be well known for specific dental practices. To provide epilepsy patients with quality dental care, dentists must be knowledgeable about the connections between seizures and teeth. The unexpected nature of seizures and adverse drug reactions may increase the long-term repercussions of epilepsy.

Epileptic seizures, which are frequently brought on by stress and hypoglycemia, have been found in research to be the most frequent medical occurrence in dental surgery. Dental injuries are the third most prevalent non-fatal seizure-related injury, following head injuries, burns, and scalds. People with epilepsy can pay a high price for having the condition, requiring frequent dental treatments for seizure-related teeth and gum damage.

What exactly is epilepsy?

Brain damage caused by epilepsy is a disorder. It means that those with epilepsy experience seizures that begin in the brain and spread to the rest of the body. A seizure may only last a few seconds, and the affected person may appear slightly disoriented. They could also be more prolonged and include muscle convulsions. The reasons for epilepsy can also vary; they may be inherited, meaning they run in families, or a brain injury may bring them on.

Typical symptoms of epilepsy

With generalized seizures, which happen when the entire brain is affected, the following signs and symptoms are typically present:

·       Temporary disorientation, eye blinking, or a period of intense gazing

·       Abrupt collapse

·       Sudden, uncontrollable stiffness or jerking of the arms and legs

·       Becoming unconscious

Risks to oral health

The convulsions frequently linked to epileptic seizures can result in a variety of oral problems, such as:

·       Tongue or cheek bites caused by grinding teeth

·       Teeth with cracks or chips

·       Removal of a tooth from its socket

·       Dislocation of the TMJ disc due to trauma

·       Jaw fracture

Unfortunately, many of the drugs used to control seizures can also lead to oral health issues like bleeding gums, gum hyperplasia, and even tongue enlargement and ulcers brought on by a B-12 shortage. Vitamin D, a nutrient that supports strong bones and teeth, might be affected by the same medications’ effects on absorption. The best defence against these problems is good oral hygiene, including frequent dentist visits.

Conclusion

According to studies, people with epilepsy typically have more missing teeth and are less likely to get them replaced. However, if your medical professionals are in consensus, replacing your missing teeth is often advantageous. Make sure your doctor is aware of all drug interactions and uses materials that can survive the severity and frequency of seizures if dentures, implants, or oral surgery are being performed.

 

Source: dentalnewspk.com, Amna Bilal

Wearables will play a pivotal role in epilepsy seizure management

Wearables will play a pivotal role in epilepsy seizure management

Epilepsy and associated seizures affect close to 3.4 million people nationwide, according to the CDC. The key to managing seizure attacks is understanding key risks and taking steps to avoid common triggers.

Wearables are increasingly going to play a role in seizure detection and management.

New studies look at how wearables could detect and monitor epilepsy seizure onset

Two recent developments in this space suggest that we will see new service offerings and products in this space very soon.

New developments in seizure detection

Reliev Technologies is a key player that has been making significant progress in Epilepsy detection and management.

Based out of France, this niche company has launched a small clinical trial this month that aims to evaluate if their non-invasive wearable device can be useful in a real-life setting in detecting seizure occurrence.

The platform analyzes various parameters such as heart rate, respiratory, and accelerometry data in order to do this.

Drug-resistant patients experience seizures despite their medications. They often can’t tell when a seizure might happen. The unpredictability of seizures is extremely stressful.

The company’s medical device is focused on two key aspects of this challenge.

  • Their wearable medical device helps with discreet automatic seizure detection.
  • The company hopes to offer a personalized seizure forecasting service that can be a true game changer for patients.

New research out of the Mayo Clinic

Mayo Clinic’s researchers have also been exploring various facets of epilepsy and seizure management for some time now.

In late November, Mayo Clinic announced that they have launched a study that uses a wearable device to monitor seizures in autoimmune epilepsy.

The Mayo Clinic research is to search for reproducible changes in a wide range of physical signals, including heart rate, muscle tone and activity and EEG before and at the onset of seizures in patients with epilepsy.

Mobile and wearable technology is going to play an important role in the management of other nervous system disorders.

Other developments

This month, a new report in the Nature journal showcased how smartphone accelerometer data can be used as a proxy for clinical data in modeling of bipolar disorder symptom trajectory.

The researchers for this bipolar disorder symptom trajectory research used iPhone accelerometer data.

In this study of 291 patients, the researchers found that a key limitation was that their BiAffect mobile app currently only works on iPhones, rather than Android as well. 

This was due to technical limitations in deploying these kinds of sensor-based ambulatory assessment apps on both iPhone and Android due to the way their application programming interfaces (APIs) handle sensor hardware.

Additionally, there are challenges with fragmentation in Android, with multiple concurrent OS versions and countless original equipment manufacturer (OEM) hardware modifications. This bodes well for companies like Apple as it offers a consistent device strategy and OS versions.  

Looking forward

In summary, research shows that with treatment, nearly 6 out of 10 people living with epilepsy could be become seizure-free within a few years (according to the Epilepsy foundation).

Wearable device developments and other mobile data based technologies can go a long way in helping people manage their seizures.

 

Source: myhealthyapple.com,  Niel Smith

 

Woman with epilepsy hits out over PIP benefits cut

Woman with epilepsy hits out over PIP benefits cut

A GREENOCK woman with epilepsy was left in turmoil after the benefits she has been on for a decade were bizarrely cut off by the government.

Ashley McLoone, 37, from Larkfield, has had the condition all her life but has been suffering frequent seizures ever since high school which have become worse during her thirties.

The young woman says her physical and mental health, ability to find work and financial situation, are all affected ‘immensely’.

She told the Tele she was stunned when, despite her deteriorating condition, benefits bosses recently revoked her payments in the middle of the cost of living crisis.

To mitigate the impact epilepsy has on her, Ashley has been receiving Personal Independence Payment (PIP) as a supporting benefit from the government for the past 10 years.

However, after a recent assessment by a representative of the Department for Work and Pensions (DWP) – who administer the payment – she was told she would no longer be eligible.

Ashley said: “My epilepsy never leaves me, but this assessment said I don’t need enough help to qualify for PIP.

“I had an assessment phone call where I was asked if I can shower myself, how I get around, about things I do in my spare time, and so on.

“I told them everything.

“They then said I had ‘zero points’, which means I am not entitled to help.

“It has been so frustrating.

“I have never had that happen before in all the years of getting it.

“I already don’t get much between my cleaning job – which is only seven hours a week right now – so I really rely on getting the extra money from PIP every month to get by, especially things are so expensive now.

“It also qualifies me for the bus pass I need to get me to work.

“Without PIP I have to pay for public transport, but that is the only way I can get around or to work, because I can’t drive due to my epilepsy and frequent seizures.”

According to the government body, PIP is available to those with a long-term physical or mental health condition or disability who also have ‘difficulty doing certain everyday tasks or getting around because of their condition.’

After Ashley was told that she would not qualify for the supporting payment any longer, she reached out to the Tele and we immediately highlighted her case with benefits bosses.

They then performed a u-turn – stating that Ashley’s case had been reviewed quicker than anticipated and that they had decided to overturn the previous ruling.

They have also decided to bump up her monthly payments and paid back the money that she should have continued receiving all along.

Ashley says she was left ‘really worried’ after being cut off and is now hugely relieved at the sudden change of heart.

She told the Tele how epilepsy affects her day-to-day life.

Ashley said: “The last time I had a seizure was at the start of November during a first date with someone.

“I ended up having five seizures in a row.

“It affects my physical and mental health majorly.

“When I have a seizure, it takes time for me to recover.

“Every day I don’t, it is a constant worry that I could have a seizure anytime.

“I take medication seven days a week, several tablets a day.

“Its come up when applying for jobs, that I could end up with more sick days because of seizures, or that I can’t travel for anything that’s too far away or has unusual hours, because I am so reliant on public transport and their timings.

“I have also had seizures while working before and have had to take time off to recover from a seizure I had outside of work.”

A spokesperson for the DWP said: “We support millions of people every year and our priority is ensuring they get the help and support to which they are entitled.

“Following a mandatory reconsideration, Ms McLoone has now been re-awarded PIP and all arrears due to her will be issued overnight.”

*Epilepsy Action offer guidance on welfare and benefits, as well as other support for anyone with epilepsy and can be contacted on their free 0808 800 5050 helpline or by visiting epilepsy.org.uk

 

Source: greenocktelegraph.co.uk

New Approach to Treating Neurological Conditions Such as Epilepsy

New Approach to Treating Neurological Conditions Such as Epilepsy

According to the United Nations, up to 1 billion people, or nearly one in six of the world’s population, have some kind of neurological disorder.

In a recent study, scientists from MIT and Harvard’s John A. Paulson School of Engineering and Applied Sciences (SEAS) found a new way to use light to target and change the long-term behavior of damaged brain neurons.

Their research paves the path for potential new treatments for neurological disorders like cerebral palsy and epilepsy.

The study, featured in Science Advances, uses optogenetics, which is a way to change how neurons work by using light. This method has been celebrated in scientific circles due to its benefits in many studies on neurological conditions. However, current optogenetic techniques have only been able to temporarily change neuronal behavior. Once the light turns off, the neurons go back to their original behavior.

A neuron’s behavior depends on two main things:

  • How well its ion channels connect.
  • How well the cell membrane can store an electric charge, known as its capacitance.

Most optogenetic techniques target the way ions move through ion channels. By opening or closing a certain group of channels, the excitability of the neuron can be changed. This method can change how easily a neuron fires, but only for a short time.

In this new study, co-authored by Assistant Professor of Bioengineering at SEAS, Jia Liu, all of that might change.

“You can imagine a neuron as a resistor–capacitor circuit and the cell membrane as a dielectric material. Just like with any circuit, if you change the capacitance of the material—in this case, the cell membrane—you can change the intrinsic excitability of the circuit in the long term, from high excitability to low excitability or vice versa,” said Dr. Liu.

The main difference between the new study’s optogenetics techniques and previous ones lies in the light-sensitive enzymes.

Researchers used light-sensitive enzymes to trigger changes on the surface of cell membranes by either insulating or conducting polymers, which are made up of a number of joined-together monomers (a molecule that can be bonded to other identical molecules).

The main point of this process is to use enzymes to target the cell membranes of specific neurons. Researchers found that they could change how excited the neurons were by changing how long they were exposed to light. The coatings on the neurons became more insulated or conducted the longer they were in the light.

Neurological disabilities include a wide range of conditions, such as epilepsy, learning disabilities, neuromuscular disorders, autism, ADD, brain tumors, and cerebral palsy, to name a few. While some people are born with neurological disorders, others can be caused by tumors, trauma, or infections.

According to the United Nations, up to 1 billion people, or nearly one in six of the world’s population, have some kind of neurological disorder.

Epilepsy is one of the more common neurological disorders, with around 50 million people worldwide living with it today.

Epilepsy is marked by repeated seizures, which are short periods of uncontrolled movement that can affect just a part of the body (partial) or the whole body (generalized). They can sometimes cause the person to lose consciousness and lose control of their bowel or bladder functions.

This study is potentially boundary breaking in epilepsy and neurological disorder research. The research team intends to expand its studies to include brain tissue slices and animals in the future.

 

Source: healthnews.com, Jasper Joyner

Mental health, more children’s disorders but lack of neuropsychiatrists – Medicine

Mental health, more children’s disorders but lack of neuropsychiatrists – Medicine

(ANSA) – ROME, DECEMBER 14 – The “worrying increase in neurological and psychiatric disorders in childhood” continues. But, in the face of this, “in the next two-three years, the shortage of child neuropsychiatrists will be dramatic”. To stem it “we need at least 400 new scholarships a year to train specialists” necessary to support the growing need for assistance and the reduction of doctors due to retirement. The alarm was sounded by the Society of Child and Adolescent Neuropsychiatry (Sinpia) on the occasion of the first National Conference of Child Neuropsychiatry Residents, scheduled in Brescia on 16-17 December.

“The protection of the neuropsychic development and mental health of the new generations is an absolute priority, now made dramatic by the consequences of the pandemic”, explains Elisa Fazzi, president of Sinpia and director of the Child and Adolescent Neuropsychiatry Unit ASST Spedali Civili e Università of Brescia. The increase in annual specialization contracts in child neuropsychiatry has gone from 99 places in 2018 to the current 283, but “they are still not enough. We ask – he continues – that university programming does not leave this discipline without resources”, which deals with many conditions, from autism to attention and learning disorders, from epilepsy and infantile cerebral palsy to depression, psychosis and addictions in minors. “In the next two-three years, the shortage of child neuropsychiatrists”, Fazzi denounces, “will be dramatic and it will not be possible to fill the vacancies. Services and facilities for minors, already seriously undersized, will be unable to provide the necessary assistance”.

However, there is also a shortage of beds in pediatric neuropsychiatry: “to date only 395 compared to a requirement of at least 700”, explains Antonella Costantino, director of the Child and Adolescent Neuropsychiatry Unit of the Irccs Ca Foundation ‘ Granda of the Polyclinic of Milan. “And even more – he concludes – are the critical issues in local services that urgently need to be strengthened”. (HANDLE).

 

Source: breakinglatest.news,

CBD explained

CBD explained

Seems like you see CBD everywhere these days: oil, balm, tincture, gummies, prerolls, pet treats, bath bombs. There’s even a CBD-infused sports bra! What’s up with all the CBD? Is there really anything substantive to it or is CBD just the latest snake oil?

The bottom line is that CBD can provide significant health benefits but consumers need to be wary of hyperbolic claims and steer clear of ineffective or even harmful products. Definitely a case of caveat emptor out there. Let’s start by getting the basic facts straight.

Short for “cannabidiol” (pronounced “can-uh-bid-dial”), CBD is one of the compounds known as “cannabinoids” produced by the Cannabis sativa plant. Unlike its more famous cannabinoid cousin, THC, CBD isn’t intoxicating. But CBD has therapeutic properties many people find helpful in managing a wide variety of conditions or enhancing general wellness.

CBD first rose to prominence about 10 years ago following the case of Charlotte Figi, a young child devastated by severe epilepsy that resisted standard pharmaceutical treatments. When her desperate parents tried CBD her seizures immediately declined and she was able to enjoy a normal childhood.

While epilepsy is the only condition the FDA has officially approved CBD for, many people also use CBD effectively for anxiety, insomnia, migraines, chronic pain, PTSD, and treating opioid addiction. Others have found CBD improves mental focus and concentration. There are even some preliminary indications that CBD may help fight cancer. Research is still in early stages but as more studies are published scientific knowledge is beginning to corroborate some of these anecdotal experiences.

How Does CBD Work?

CBD interacts with our body’s endocannabinoid system (ECS), a complex network of chemical signals and cellular receptors found throughout our body and brain. Research suggests that the ECS functions to maintain equilibrium and homeostasis. Our body produces its own endocannabinoids very similar to the phytocannabinoids found in cannabis, and both types of cannabinoids stimulate the ECS. Since CBD is a phytocannabinoid (“phyto” meaning plant), it interacts with our ECS to produce various effects.

Is CBD Legal?

As we established earlier, CBD is produced by the Cannabis sativa plant, which includes both marijuana and hemp. What’s the difference? Hemp contains less than 0.3% THC and was federally legalized in 2018, so CBD derived from hemp is not considered a controlled substance by the federal government. In Maine CBD products are fully legal for people age 21 and over.

Some CBD products are topical, like balms or lotions, and used for soothing inflamed or irritated skin, relieving sore muscles, and addressing localized discomfort. Patients suffering from arthritis, for example, often find relief from a good CBD balm rubbed into the hands. Topical CBD products don’t introduce CBD systemically, so the effects are limited to the area of application. Onset of effects is within 5 minutes.

Other CBD products like oil and tincture are taken internally: either ingested (often with food or beverage) or administered sublingually (under the tongue). These products introduce CBD into your bloodstream where it’s distributed throughout your body. It generally takes 1-2 hours for the onset of effects when ingested, and 10-15 minutes when taken sublingually.

Finally, some people administer CBD by smoking or vaping hemp flower (vape cartridges aren’t recommended as they have other potentially harmful ingredients). Systemic effects are usually felt within a minute or two.

People respond to CBD in different ways – it’s not a “one size fits all” proposition. Always talk with your doctor or caregiver first. There’s typically an optimal dose beyond which CBD’s efficacy declines–more is not necessarily better. This “sweet spot” is highly individualistic and depends on many factors such as body weight, metabolism, and other factors.

There’s a wide range of products sold under the name “CBD”–it’s truly a “wild west” situation and you should be extremely careful. Only buy CBD products from an honest, knowledgeable, transparent, and trustworthy source. How do you know for sure? The ideal source is someone you know personally and trust; but beyond that there are a few things to look for:

• Tested by a third-party laboratory for purity and potency: often known as a “Certificate of Authenticity” or COA, the lab report should indicate CBD content as well as a screening for heavy metals, pesticides, solvents, and mold.

• Certified organic: It’s safest to only buy certified organic CBD products made from hemp flowers grown in the U.S. Hemp is a good bioaccumulator, which means if the soil is contaminated with heavy metals, pesticides, or other toxins the plant will readily take up those substances. There are also careless, ignorant, or unscrupulous growers who use chemicals that could be harmful if ingested.

• Full-Spectrum products made from whole hemp flower: research and anecdotal evidence indicate that CBD products made from whole flower and labelled as “full-spectrum” are more effective at lower dosages due to the “entourage effect of all the cannabinoids, terpenes, flavonoids, and other valuable compounds contained in the hemp flower.

 

Source: penbaypilot.com, Ed Geis

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