Epilepsy Association “Giving Tuesday”

Epilepsy Association “Giving Tuesday”

Today is “Giving Tuesday” an international day of giving to charities and nonprofits. Established in 2012 in New York City, Giving Tuesday has become a global movement of generosity.

Giving Tuesday is a day about community. It unites people of all backgrounds from around the world in doing something good for others, and lifting each other’s spirits during a time of year that is more difficult for some.

The Epilepsy Association appreciate everyone that support our organization, and we invite people to donate what they can to create systemic change. We each can drive an enormous amount of positive change by using funds, skills, goods, and advocacy to help others.

The Epilepsy Association working hard to drive epilepsy awareness in the counties we serve and provide opportunities to make a difference.

This is your chance to share some LOVE today!

OUR MISSION

“The Epilepsy Association is dedicated to improving the quality of life of persons affected by epilepsy and seizure disorders and reducing the incidence of onset.”

Donate Now
Epilepsy Association “Giving Tuesday”

Dogs for adoption Sheffield: Forever homes wanted for dogs unable to be used by charity

A Sheffield charity which provides support dogs is looking for forever homes for some of the dogs it has trained up which will be better suited to being pets.

Support Dogs has issued an appeal for dog lovers to take on their ‘amazing dogs’ who for various reasons have been unable to finish their training.

The charity is dedicated to saving and improving the lives of children and adults with various challenging medical conditions. It provides, trains and supports specialist assistance dogs to achieve this.Support Dogs offers autism assistance dogs for autistic children, which are trained to provide safety for the child and reduce stress in social environments.The charity also provides seizure alert dogs for people with epilepsy. The dogs are trained to provide a potentially life saving alert up to one hour before an epileptic seizure. This enables the client to find safety and be in control over their seizure, allowing a much more independent life. It also provides disability assistance dogs for people with physical disabilities. The client’s own pet dog is trained to perform tasks which are specifically tailored to their individual needs, providing them with greater independence and safety.

Established in 1992, Support Dogs provides all it services entirely free of charge to those in need of them. The charity relies solely on voluntary donations and receives no government funding.One in four of the dogs trained go to the charity from rescue centres or as unwanted pets.

However, not all dogs end up being suitable, so the charity is looking those.

In an appeal to animal lovers, Support Dogs said: “If you are interested in adopting one of our amazing dogs who sadly cannot finish their training, then please get in touch to find out more. The welfare and comfort of our dogs is an absolute priority. Occasionally, a dog can be more suited to being a lovely pet rather than a working dog, and so we want to find them the best possible forever home to go to.

“We are looking for special people who are able to provide a permanent home to our dogs that are unable to finish our training programme due to specific behavioural needs.”

To find out more email info@supportdogs.org.uk or call 0114 261800.

 

Source: thestar.co.uk, Claire Lewis

Epilepsy Association “Giving Tuesday”

Epilepsy Affects Millions of People

November Is National Epilepsy Awareness Month

Epilepsy is a neurological disorder that makes people more susceptible to seizures. A seizure happens when brain cells misfire, causing abnormal electrical activity in the brain. People with epilepsy may have just one episode or many. They may recover quickly after the seizure or be affected for hours or even days. Most epileptic seizures stop on their own and don’t cause permanent harm — but for those who do suffer serious complications, early diagnosis and treatment can make all the difference.

It causes uncontrolled muscle movements and changes in sensation and awareness. A person having a seizure will usually fall unconscious for a few moments, or even longer.

Anyone can have one or more seizures at any time during their life, but some people are at risk for developing epilepsy because they have had repeated seizures that started from the brain.

When this happens, they send signals to the rest of the body that can cause muscles to tense up or become weak. This can cause you to lose control over basic things like walking and speaking.

After a seizure, it may take a while for your body to go back to normal. But as long as you rest and drink plenty of fluids afterward, most people get better quickly without any lasting damage from seizures.

Seizure Statistics

Epilepsy
Courtesy of H Bain (Flickr CC0)

Epilepsy affects approximately 1 in 26 people. Any age, ethnicity, or gender can have a seizure. They are not contagious and do not cause long-term harm to the body or brain. However, having one is still frightening for many people.

One out of every 10 Americans will have a seizure at some point during their lives — that equates to about 65 million people. It’s also very common for people who have had one seizure to have another in the future, but only about half of those will develop epilepsy (recurrent seizures). Even though anyone can have a seizure, there are several factors that put you at higher risk:

  • Age: Children under age 2 and adults over age 65 are more likely than others to experience epilepsy. The condition affects about 1% of people over the age of 65, but only about 0.5% of those under 20 years old. In fact, epilepsy is more common in men than women. It’s also more likely to occur in people with a family history of epilepsy or brain injury caused by birth trauma or stroke than it is to be randomly acquired throughout life.
  • Genetics: If you or your family members have had epilepsy or certain types of brain surgery due to stroke symptoms then it may increase your likelihood of having seizures as well. It’s important to note that while early-onset seizures can indicate a genetic predisposition for this condition, they do not necessarily mean that someone will develop epilepsy as an adult — or even at all.

Types of Seizures

Various types of seizures can occur. Focal seizures are the most common type and occur in about 60% of epilepsy cases. These are characterized by a sudden onset with a feeling of loss of awareness or consciousness. The person may look like they are staring off into space and not aware of their surroundings during the seizure, which usually lasts less than two minutes.

Generalized seizures involve both sides (hemispheres) of the brain at once and occur in about 30% of cases. They may cause loss of consciousness or convulsions that can last up to 15 minutes at a time.

Absence seizures are another type in which there is a brief loss of consciousness without convulsions. However, this typically lasts only a few seconds to several minutes per episode. Myoclonic or “jerking” seizures affect muscles on both sides simultaneously. They may begin as focal jerking movements but then spread throughout other parts of the body such as arms or legs until they become generalized muscle spasms lasting anywhere from one minute up to five minutes at a time depending on severity level, according to Seizure Types.

Tonic-clonic seizures typically last between 30 seconds to approximately five minutes before calming down again. Once receding back into normalcy over several hours after the initial onset occurs. patients can resume regular activities.

Epileptic seizures are dramatic, sudden events. They can take many forms, from convulsions to staring off into space for a few seconds. Some people have auras — sensations that they’re about to have a seizure — while others experience involuntary movements during the seizure itself. Sometimes people have difficulty speaking or trouble breathing during an epileptic episode.

Epilepsy Medications

Most epilepsy medications prevent seizures from happening. However, some can actually make seizures more likely. Some drugs may even cause your risk of having a seizure to go up and down, depending on how you use them. For example:

  • Some anti-seizure medications might not work at all for you if you take them with certain other drugs or alcohol.
  • Taking higher doses of certain anti-seizure medications can increase the chance that your seizures will come back after they’re gone for a while (recurrent seizures). If this happens, talk with your doctor about changing your treatment plan so that it includes another drug that works better for you and has fewer side effects.
  • Taking higher doses of certain drugs might also increase the chance that someone who doesn’t have epilepsy will start having seizures (seizures caused by medication). If this happens to someone close to you who does not have epilepsy and is taking one or more of these drugs as prescribed by their doctor — or even if they are misusing illegal drugs — talk with them about what’s causing their symptoms. Ask whether there are other ways to help avoid unwanted side effects without stopping taking any medicines altogether.

Seizure Myth

There are some things that seem like they might cause seizures but don’t. These include:

  • Alcohol: You may have heard stories of people having a seizure after drinking alcohol. However, this is rare and usually only happens if you’ve already had a seizure disorder or brain injury before you started drinking. It can also happen if you drink too much over time (binge drinking). For example, one study found that people with epilepsy were more likely to have a seizure after having four beers in one hour than people without epilepsy who drank the same amount of alcohol within that period. But remember — your odds still aren’t high enough to stop you from enjoying your favorite beer.
  • Sleep deprivation: Missing out on sleep will make anyone feel tired and grouchy — but it won’t trigger seizures on its own. The only exception is if someone has narcolepsy — a condition where they fall asleep at random times throughout the day. In fact, studies show that getting enough sleep helps lower the risk of having seizures. This makes sense because sleep helps regulate hormones that control blood pressure and metabolism as well as how our brains process information during waking hours. All this helps prevent other conditions associated with increased risk of seizures like Alzheimer’s disease or depression later down the road.

Breaking the Stigma

National Epilepsy Awareness Month was created to help break the stigmas surrounding the disease. For a long time, people attributed epileptic seizures to spiritual or demonic possession. This belief continued until 1980 when people suffering from epilepsy were finally allowed to marry in the United States.

Individuals who suffered from this disease experienced significant discrimination at school, at the workplace, and in other settings. Thanks in part to Tony Coelho, former U.S. Representative, and member of the Epilepsy Foundation’s Board of Directors, the Americans with Disabilities Act (ADA) became law in 1990.

President George W. Bush signed the ADA Amendments Act restoring the original intent of Congress and clarified the definition of “disability” to encompass episodic conditions like epilepsy in 2008. By 2010, people who had pre-existing epileptic episodes were able to receive coverage for their conditions.

This disease affects roughly 3.4 million people in the U.S. It is important for people to be aware of this ailment so they are not afraid or confused if they see an epileptic episode.

Source: guardianlv.com, Sheena Robertson

Epilepsy Association “Giving Tuesday”

Advice on How to Get Rid of Anxiety in Your Life

You might feel uncomfortable if you or a loved one is having an epileptic seizure.

Epileptic seizures cause serious neurological damage because they interfere with the brain’s intricate chemical processes. In a small percentage of otherwise healthy individuals, anti-epileptic medications have been related to anxiety and other mental health issues.

Anxiety has been associated with a number of detrimental health outcomes. Despite how things appear to be, fear and concern are still possible sensations. The first step in solving a problem is acknowledging that you have one. If you read this and adhere to the directions, you won’t experience any problems in the future.

People who are underweight frequently experience acute panic attacks.

It is safe to cross the street after the light turns green. It will be easy to get to sleep and keep blood sugar levels steady. For stable blood sugar levels, it’s essential to keep a steady supply of nutritious snacks on hand and eat frequently.

If we collaborate, we can accomplish a lot for our organisation. Your ability to communicate with the outside world may be severely limited. You will be delighted with the outcomes if you put in the required work. Consistent habits must be formed in order to keep your sanity.

Every second counts when you’re in the thick of things.

You need to get a head start on a project if you want to finish it on time. There are numerous methods for broadening one’s perspective.

Inform a trustworthy person about your feelings. Before selecting a choice, it’s a good idea to get feedback from a wide range of people. Over-dependence on other people frequently causes more issues than it resolves. Keep lines of communication open with the people who mean the most to you. In the upcoming years, we expect development and success to continue.

The place has gone silent as people run away in terror.

The human nervous system is designed to respond swiftly when faced with danger. In today’s hectic society, the ordinary person can move between tasks with ease.

You should seek help right away if you think trauma has affected your mental health. Seek medical help if the situation gets worse. A thorough physical examination will include an assessment of your present and historical medical issues.

To identify and treat a potentially life-threatening medical disease, a “battery” of tests, or series of tests, may be performed simultaneously.

Justify your continued employment in your current capacity. Close family and friends may become concerned if a person’s behaviour changes suddenly. The DSM might contain the solutions to your difficulties if you see a qualified specialist.

When they work with an experienced therapist, some people experience great alleviation from their anxiety. The majority of medical conditions, whether acute or chronic, are often treated using prescription drugs. There are, however, some drugs that can aid in lessening the negative bodily effects of anxiety and stress. When beta-blockers were originally discovered, they were utilised to treat potentially fatal arrhythmias and heart conditions.

After engaging in behavioural therapy, many patients report feeling less anxious.

Patients are urged to actively participate in their care by being knowledgeable about their conditions and selecting the methods that will work best for them. Once you attain the legal consent age in your nation, you are free to do whatever you choose.

Drugs used to treat anxiety are no longer effective because of withdrawal and tolerance. When beginning any anti-seizure medication, patients with epilepsy should continue with caution as many of them also have anti-anxiety qualities. Many epileptics worry that their anxiety may increase as a result of their seizures. Anyone who has experienced an epileptic seizure can attest to the awful emotions that typically come after.

I can relate from experience since I know what it’s like to be isolated while dealing with the symptoms of a chronic illness. Knowing the locals in your neighbourhood is essential. The neurological system and other areas of the body are impacted by anxiety, although it is unclear how and why. Because of their disease, people with epilepsy encounter prejudice and animosity in the US.

After having a seizure, many people experience anxiety.

It’s important to comprehend what seizures in people are brought on by. This enables medical professionals to gauge their patients’ levels of anxiety.

The authors hoped that their research would provide fresh insight into the far-reaching effects of worry.

Conclusions Compared to the general population, people with epilepsy have a significantly higher rate of mental and emotional health issues. Just two of the many mental health conditions connected to continuous worry are anxiety and depression. Patients might now anticipate a better prognosis for their condition as a result of medical advancements.

Patients will value the accessibility of their providers. Only two diseases have benefited from pregabalin treatment: anxiety and epilepsy. Pregalin 50mg capsules, Pregabalin 75mg capsules, and generic lyrica 300 mg capsules are the three generic lyrica dosages currently on the market.

It has been shown that focusing on one’s achievements can increase one’s sense of worth.

To make the most of your time and accomplish more, all you need to do is plan out your week in advance and concentrate on your main goals. Lower vulnerability to stress is one of the many benefits of keeping the mind active and engaged. Maintaining a consistent rate of effort is one of the most crucial things you can do to achieve anything you set your mind to.

One of the alleged advantages of fasting is a feeling of calmness. Some people are shunning entire food groups as extremely low-calorie diets become more common. They’ll simply make things more challenging for you.

Use anxiety medications as prescribed and on a regular basis to achieve the best results. You ought to store it safely and out of the way. Long-term use of medication regimens involving once-daily, once-weekly, or once-monthly dosages is frequent (months to years).

Emotions shouldn’t be repressed. Talk about your worries with a reliable person, like a relative or close friend. Sometimes coming up with new ideas merely requires venting to a reliable friend or coworker. You might feel a lot better once it’s through.

While strenuous activity boosts cortisol levels, moderate exercise lowers them.

Move about or do some modest exercise to counteract the physical consequences of stress. Events will eventually show how intelligent your choice was.

A potentially hazardous new event shouldn’t be viewed with suspicion. If you believe in yourself sufficiently, you can accomplish anything. It is refreshing and energising to hear an opinion that is so dissimilar from the norm. Individual relationships will thus get stronger over time.

A non-drug method for reducing anxiety is homoeopathy. Any good health food store ought to carry these products. A trip to a homoeopath can be necessary if conventional treatment has failed.

If you want to feel less anxious, get out of difficult situations.

Lack of social support has been associated with depressive symptoms. Being in a negative environment might make you feel less than human.

For those who experience severe anxiety, a change in routine might be helpful. Please choose the response that most accurately reflects your current state of mind. Nobody is given the chance to make their mark on the world more than once. You should read it again and then let me know if you need more time to consider your options. If you take my recommendation, you’ll feel much better.

 

Source: publicistpaper.com, CHRISTOPHER STERN

Epilepsy Association “Giving Tuesday”

The value of epilepsy specialty nurses: Taking action

Newswise — Epilepsy specialty nurses (ESNs) play crucial roles in epilepsy care; they’ve been called the glue that holds together the social, clinical, educational, and emotional dimensions that people with epilepsy must navigate. The breadth, depth, and impact of ESN roles is not always recognized or valued. Changing that is one of the aims of the ILAE Nursing Section, formed in 2021.

Epigraph spoke with Nursing Section leaders Karen Legg, Patty Osborne Shafer, and Jane von Gaudecker about the roles and responsibilities of ESNs and how clinicians can support them.

Better outcomes through patient education

Educating people with epilepsy and their families is a key role for ESNs; such education can improve outcomes and quality of life. Shafer presented a scenario in which an adult is diagnosed with epilepsy, given a prescription, and told about medication side effects—with no further discussion.

“Nine times out of ten, that person is going to go home and say, ‘Why am I taking this [medication]?’,” said Shafer, an ESN and consultant in Boston. “And then they might not end up taking it. No one’s addressed what to do if a seizure happens, what to do if they forget to take the medicine, what do they tell their family and friends, what if they can no longer drive,” and other issues that surface after a diagnosis.

“When you think about who answers those questions, in many cases, that’s the nurse,” Shafer said.

Nurses also address social, emotional, and lifestyle aspects, she said. “How can I help you look at how your life might be affecting your epilepsy, and how your epilepsy might affect your life?”

Telephone practice in specialized epilepsy care

Telephone practice can be a major part of a nurse’s role, particularly in specialized care environments, said Legg, a recently retired epilepsy nurse practitioner from Nova Scotia.

Patients call for a variety of reasons. “Maybe they picked up their prescription at the pharmacy, and something the pharmacist said scared them and now they don’t want to take the medication,” said Legg. “So you reiterate the value of the medication, you talk about the side effects, you remind them they’re not marrying the drug, they’re just trying it and we’re going to see how it works. And if it’s not the right one, we bring them back in and we make a change, or we make a change over the phone, without having them drive 2 ½ hours to the clinic.”

Education is a major goal here as well. “When someone calls in and says their family doesn’t understand their seizures, you set up a group Zoom or phone call, or if they’re close enough, you bring them all into the office and say okay, let’s talk about what epilepsy is,” said Legg. “And you teach them.”

Many physicians’ practices aren’t built to accommodate or bill for this aspect of care, said Legg. “There are wonderful neurologists or epileptologists who do have practices that permit that time, but in areas where there is nursing, it’s often the nurse who takes on that role.”

It’s a role that is not always valued on par with typical physician roles, said Shafer. “You can tell what is valued when you go to conferences and there’s someone talking about the impact of epilepsy, and it’s rarely a nurse talking,” she said.

Epilepsy Specialty Nurse roles

Direct client care: Building relationships with people with epilepsy and their families; communication; assessment; management; consultation and referral; health promotion; collaboration with other health care professionals. Diagnosis and prescribing also may occur (nurse practitioners).

Education: Education of people with epilepsy and their families, other health care professionals, and school personnel, as well as academic teaching (college/university students).  Also includes personal continuing education and professional development

Quality improvement initiatives: Patient information pamphlets, emergency department algorithms, safety reviews

Research: Participating in and disseminating research

Leadership: Presentations, publications, editorial boards, participation in national and international organizations

Recognition and value

Many people with epilepsy are very aware of nurses’ contributions to their care. A 2022 report by Epilepsy Consortium Scotland outlined the importance of ESN services during the pandemic. Patients interviewed for the report described ESNs as approachable, easy to understand, and as a “bridge” between the patient and the neurologist. They said they asked their ESN some questions that they would not ask their neurologists. And they said that ESNs had a positive impact on their mental health and helped to reduce anxiety.

One participant said their ESN introduced them to a new way of thinking about their own health. “It was the first time that I’d ever gone to a medical professional, either for my diabetes or my epilepsy, and they had asked me what I think,” the participant said. “That changed my whole ethos on health management.”

But institutions may look to research to show value, and research on the value of nurses in epilepsy care is limited. A systematic review of the literature completed in 2019—the ESPENTE study—found only 61 research publications on the value of ESNs. Most were from the UK, where ESNs have a relatively long history; the first ESN was employed there in 1988, and the Epilepsy Nurses Association formed in 1992.

“One of the challenges is the diversity of evidence for the value of ESNs and what counts as evidence, which seems to boil down to randomized, controlled trials,” said Jon Dickson (University of Sheffield, UK) an author on the study. “Anything other than that is sort of disregarded.

“In my mind, ESPENTE shows significant and compelling evidence, and I’m not sure why there’s this inertia, apart from this epistemic issue about what counts as knowledge.”

“The value question is an interesting one, because we don’t go around trying to prove the value of nursing care in general with research,” said ESPENTE author Fiona Campbell (Newcastle University, UK). “So much of health care isn’t proven by a trial, but it’s nevertheless valued.”

The ESPENTE authors noted that randomized controlled trials have a limited duration of assessment and follow-up, which may not capture the depth and breadth of ESN roles. And because the ESN role is so varied, and the same ESN’s role can change over time, research in one setting may not translate to other settings. For example, ESNs who work only with children and their families may spend more time supporting caregivers, whereas those working with adults may focus more on medication side effects or employment-related issues.

Finally, research in and of itself is not necessarily helpful, said Campbell. “You cannot say an ESN is effective, or cost effective, without understanding the support they need, the optimal caseload, the training they need, the team profile that makes them effective,” she said. “It’s not a question of whether they are effective, but what do they need to ensure they are effective.”

Research examples

Though few controlled studies have been done, published research reflects the value of ESNs. A 2018 study sought to determine whether there were differences in experiences of care, satisfaction with care, and quality of life in people with epilepsy receiving care from a service that had an ESN, compared with those receiving care from a service that did not include an ESN. Researchers administered a survey to 505 adults with epilepsy; 244 had received ESN services and 261 did not.

Those who were cared for in a service with an ESN:

  • Received more information about their epilepsy
  • Were more involved in their care
  • Perceived their care to be better coordinated
  • Had more confidence in the information they were given
  • Were more comfortable discussing issues
  • Were more satisfied with the emotional and practical support they received

Research on nurses in low- and middle-income countries is almost nonexistent, despite the fact that nurses in those areas are vital parts of health care access. The few studies that do exist suggest a powerful resource going untapped.

For example, a 2008 intervention in Cameroon trained four nurses to diagnose and manage epilepsy, including prescribing medication. Two anti-seizure medications were made available, and two clinics were established. Over the 22-month study, the nurses saw 224 patients.

Overall, there was a significant decrease in the number of days per month with seizures, from 2.1 days at 1 month follow-up to approximately 0.5 days at 6 months.

The authors noted that in rural areas of low-resource regions, nurses are far more prevalent than physicians, and efforts to empower nurses to diagnose and treat epilepsy could help to reduce the wide treatment gap.

More research also could boost the value of nurses and potentially improve understanding of the roles and importance of ESNs—but such research requires funding.

“For nurses doing research, the biggest barrier we face is funding,” said Dr. von Gaudecker, Nursing Section co-chair and assistant professor at Indiana University School of Nursing. “You go to any organization and the funding is for physicians or clinicians. It’s never for nurses.”

Support from clinicians

What can neurologists and epileptologists do to help highlight the value of epilepsy specialty nurses?

“They can advocate for the nurse in their area, or advocate to get a nurse in their area,” said Legg. “And when I say advocate, I mean at an administrative level. Most nursing positions aren’t created without the support of a physician who was interested in making it happen.”

Similarly, “When administration is trying to close epilepsy monitoring units because of staffing, or pull nurses out of epilepsy clinics, if physicians say, ‘No, you can’t, this is why,’ and can articulate the value-add to the patient and to patient outcomes, then it is less likely to happen,” said Legg.

Explaining and clarifying the nurse’s role can make a difference: The 2022 report from Epilepsy Consortium Scotland found that some senior managers and other administrators may not understand the role of the ESN well enough to appreciate its importance.

Physicians also can invest in epilepsy specialty nurse professional development, said Legg, whose division shifted from giving typical holiday gifts to giving nurses vouchers to cover conference registration fees.  “That said, ‘We are investing in you’,” she said.

Research on outcomes in epilepsy specialty nurses is desperately needed, said Legg, and clinicians can support that cause as well.

“We have to organize ourselves and support nurses to help them figure out how to measure some outcomes to speak in the same language as administrators,” she said. “What is it that they do that makes a difference?”

 

Source: newswise.com, International League Against Epilepsy

Epilepsy Association “Giving Tuesday”

Lucy Winn of Whixley wins Yorkshire Young Achievers Award

A YOUNG woman who has overcome facial paralysis and epileptic seizures to launch her own successful clothing business has won a Yorkshire Young Achievers Award

Lucy Winn, of Whixley, between York and Knaresborough, woke up one morning when she was 15 to find the left-hand side of her face was paralysed.

Investigations revealed a brain abscess, necessitating surgery and months in hospital for rehabilitation.

She missed time at school but still went on to achieve her GCSEs and A-levels in Business, Art and Textiles.

However, Lucy’s problems were not over and at 19 she began to suffer seizures through epilepsy, brought on by the scarring to her brain.

Despite this, she studied at Leeds College of Art before joining Westminster University to gain a degree in Fashion Marketing and Promotion.

After a spell back at home in Whixley while her epilepsy was investigated and treatment began, she returned to London to take up a sales post. Then the pandemic hit, and she was furloughed.

She used her skills in upcycling old garments into new looks, and her business, the Vintage Studio, was born.

Working at home initially, she built up a social media following, including a number of influencers, and now has an Instagram following of more than 13,000 and some high-profile customers, including singers Mimi Webb and Zara Larsson.

Lucy now has a studio in Fulham and is keen to build her business yet further by employing a small team to offer sustainable small collections, retaining a unique look but enabling more customers to purchase something they may have seen on her sites.

Her efforts to overcome adversity have now seen her awarded a Yorkshire Young Achievers Award for Achievement in Management and Enterprise, sponsored by CHR Estates.

The Awards mark the achievements of young people in seven categories, from the Arts to Sport, and are organised by the Yorkshire Young Achievers Foundation which has now raised more than £1.3m to support young people in Yorkshire. An eighth Award is made to a Foundation supporter.

The Chairman of the Awards, Peter McCormick OBE, said: “It was a very special evening after a break of three years because of the Covid pandemic and there was much to celebrate.

“There were stories of incredible fortitude and outstanding success and it is fair to say we continue to be amazed by the fantastic young people in our region.

“These Awards are our main fundraiser of the year and none of this would be possible without the support of our sponsors and our guests, many of whom have been with us almost since the beginning.

Other recipients included Beth Mead of Whitby, whose talent helped the England Lionesses to their historic Euros win in the summer.

 

Source: gazetteherald.co.uk, Mike Laycock

Epilepsy Association “Giving Tuesday”

Aussie mum’s warning about Sudden Unexpected Death in Epilepsy after 13-year-old dies

Victoria teenager Charlotte Studham died in her sleep at just age 13. Her mum wants to raise awareness about her condition. Photo / GoFundMe

 

Victoria teenager Charlotte Studham had a “smile that lit up the room” but tragically she died in her sleep at just age 13.

Living in a small rural town close to Geelong, she was close with her family and friends and the dancer had been preparing for a performance but never made it on stage.

The teenager had epilepsy and died in her sleep on November 3.

“We would do anything to have her back,” her mother Brooke told 7news.com.au.

“But I take comfort knowing she was at her house when she passed and with people that loved her.”

Her mum now wants to raise awareness about the condition that took Charlotte’s life – Sudden Unexpected Death in Epilepsy (Sudep).

According to Epilepsy Action Australia, Sudep is when a person with epilepsy dies suddenly and prematurely and no reason for death is found.

Sudep occurs in approximately 1 per 1000 people with epilepsy and 1 in 4500 children, but the cause is not yet clear and researchers are investigating a range of possibilities such as the effect of seizures on breathing, the heart and arousal, Epilepsy Action Australia said.

Charlotte was first diagnosed with epilepsy at age 5 “but it wasn’t until four years ago where things went downhill”, her mum said.

“We spent a lot of time in and out of hospitals, so many tests and investigations which unfortunately all led to no clear answers. But she took it all in her stride and never let it stop her,” she said.

Brooke said she at one point she had 11 seizures in the one day.

“She went to hospital one time where she spent four days and was unable to talk or walk and lost part of her memory,” she added.

The teenager, who loved music, dolls, dancing, drawing, animals and her dogs, was suffering extreme seizures in the lead-up to her death and her mum thinks changing hormones and medication contributed to the severity of her condition.

Experts believe those who suffer the type of seizures that see people gripping their hands, clenching their teeth and become very rigid could be most at risk of Sudep, particularly if they are experiencing more than three in a year.

Brooke said she wants to honour her “amazing” daughter, who had a “wicked sense of humour” by raising awareness.

“Char passed away from suspected Sudep which stands for Sudden Unexplained Death Epilepsy similar to Sids (Sudden Infant Death Syndrome) in babies but due to her epilepsy,” she added.

“We are bringing awareness to this heartbreaking side of epilepsy as we have since found a lot of people didn’t know anything about it.”

The family has launched a GoFundMe to raise money for Geelong Hospital and Epilepsy Australia.

 

Source: nzherald.co.nz

Epilepsy Association “Giving Tuesday”

Maryland Governor’s House Turned Purple for National Epilepsy Awareness Month

Bowie, Md., November 22, 2022 – Today, Governor Larry Hogan will light up the Governor’s House purple to not only recognize National Epilepsy Awareness Month, but to also celebrate the passage of Brynleigh’s Act (Senate Bill 299) and the bill’s namesake, Brynleigh Shillinger. Brynleigh, who lives with epilepsy and a rare genetic condition called tuberous sclerosis complex (TSC), turned 9 years old on the same day. Maryland became the 15th state in the country to pass Seizure Safe Schools legislation in April 2022. Passage of this bill holds a special significance for the Epilepsy Foundation as it is headquartered in Maryland, and its success follows on the heels of similar legislation enacted in other states.

“Earlier this year, I was honored to sign legislation—also known as Brynleigh’s Act—that increases the amount of personnel in Maryland public schools required to complete professional seizure recognition and response training,” said Governor Hogan. “Our administration is proud to support efforts to raise awareness for epilepsy and advocate on behalf of tens of thousands of Marylanders across our state living with epilepsy.”

There are nearly 60,000 Marylanders living with active epilepsy, including almost 8,000 children and teenagers. Epilepsy affects everyone. Anyone can have a seizure and be diagnosed with epilepsy. Over a lifetime, 1 in 10 people will have a seizure, and 1 in 26 will develop epilepsy. The Epilepsy Foundation strives to educate the public and advocate for those we know, and those we don’t yet know, living with seizures.

About Epilepsy

According to the World Health Organization, epilepsy is the most common serious brain disorder worldwide with no age, racial, social class, national or geographic boundaries. The U.S. Centers for Disease Control & Prevention (CDC) estimates that 3.4 million people in the United States are affected by epilepsy. Epilepsy is the underlying tendency of the brain to produce seizures which are sudden abnormal bursts of electrical energy that disrupt brain functions.

About the Epilepsy Foundation

With a network of partners throughout the United States, the Epilepsy Foundation connects people to treatment, support, and resources; leads advocacy efforts; funds innovative research and the training of specialists; and educates the public about epilepsy and seizure first aid. In partnership with the CDC, the Epilepsy Foundation has helped to improve access to care for people with epilepsy, expanded its digital reach and online resources in homes across the country, and trained people in seizure recognition and first aid. To learn more visit epilepsy.com or call 1.800.332.1000.

 

Source: epilepsy.com

Epilepsy Association “Giving Tuesday”

Can Chickenpox Cause Epilepsy? Here’s the Connection

Chickenpox doesn’t cause epilepsy, but seizures can occur during chickenpox. Most seizures that happen when you have chickenpox are febrile, caused by a high fever.

Most of the time, chickenpox is an itchy rash, but in rare instances, it can cause complications in children and adults, particularly those with weak immune systems. One rare complication can include seizures that may develop into epilepsy after the virus has passed.

Here’s what you need to know about seizures with chickenpox, what causes them, and whether or not they’ll develop into epilepsy.

What is epilepsy?

Epilepsy is a neurological condition that causes seizures or convulsions. A seizure happens when the electrical signals in the brain surge erratically. Seizures generally last from seconds to a few minutes and affect a person’s consciousness, movements, or mental state.

According to the Centers for Disease Control and Prevention (CDC), a person must have two or more seizures to be diagnosed with epilepsy. The condition may develop without an identifiable cause or be triggered by something such as a virus or infection.

What is chickenpox?

The varicella-zoster virus (VZV) is a highly contagious disease that causes an itchy rash. The virus causes both chickenpox (typically in children Source and people with compromised immune systems) and shingles (typically in adults).

With chickenpox, a person may develop as many as 500 blisters that start on the trunk and face and then spread to the rest of the body over time. Other symptoms include fever, headache, and tiredness.

The virus generally goes away after 4 to 7 days. It can cause a number of complications as well, including brain infection, bacterial infections, lung infections, bleeding problems, and dehydration.

Chickenpox vaccine

There are two vaccines available for chickenpox:

  • Varivax – contains only the chickenpox vaccine
  • ProQuad – contains the chicken pox vaccine and measles, mumps, and rubella (MMRV)

Both are administered in a two-dose series. These vaccines work by introducing the live (but weakened) virus into a person’s body so the body can build up antibodies to fight the virus later on.

Chickenpox vaccines lower the chance of severe infection and have decreased cases in the United States by around 90%. Children receive either vaccine when they’re between 12 and 15 months old and again when they are between 4 and 6 years old.

Can chickenpox cause epilepsy?

People can have seizures related to chickenpox; however, seizures aren’t a main symptom of the virus.

There are two major reasons for seizures that are associated with chickenpox. They can occur during the acute phase of the infection, usually just once or twice, and rarely, chickenpox leads to certain complications that lead to epilepsy.

Chickenpox causes fever, and, as a result, some people, usually children, may experience febrile (fever) seizures with their illness.

Most simple febrile seizures don’t turn into epilepsy and go away when the illness has passed. Around 1 in 20 kids who experience complex febrile seizures may go on to develop epilepsy.

Very rarely, some people may develop a brain infection that can lead to seizures and possibly epilepsy.

Chickenpox-related infections that may cause epilepsy include:

  • Encephalitis: This infection causes an inflammation of the brain. It occurs in approximately one out of every 33,000 to 50,000 cases of VZV. Chickenpox makes up 23% of the viruses that cause encephalitis and result in chronic epilepsy.
  • Meningitis: The infection causes an inflammation of the membranes surrounding the brain. It’s another rare complication of chickenpox that may lead to neurological symptoms such as seizures.

What types of seizures have been associated with chickenpox?

Febrile seizures may occur during chickenpox. They affect between 2 and 5% of children ages 5 and younger. During a febrile seizure, a child becomes stiff, and you may see their limbs twitch. Children may also become unconscious or soil themselves during a febrile seizure. Afterward, the child may be very tired for an hour or so.

Usually, a simple febrile seizure will happen only once during an illness. Complex febrile seizures happen more than once and may last 15 minutes or longer.

Can the chickenpox vaccine cause seizures?

While uncommon, the chickenpox vaccine may cause seizures in some children. More specifically, the ProQuad vaccine carries a risk of seizure for children between 12 and 23 months old. The seizures may be caused by fever after the vaccine.

Experts share that these seizures aren’t harmful in the long term for children. They’re isolated to a period of time after the vaccine is given.

How is epilepsy from chickenpox diagnosed?

Make an appointment with a doctor or healthcare professional if you or your child are experiencing seizures. A doctor will give you a physical exam and go over your medical history and family medical history to help find the root cause.

If you’ve had two or more seizures after your illness or infection has passed, a doctor may order more tests.

  • Electroencephalography (EEG): EEGs measure the electrical activity (brain wave patterns) in the brain. Electrodes are placed on the head and record electrical signals from the brain.
  • Imaging tests: MRI, CT scan, positron emission tomography scan, and other imaging tests allow doctors to visualize the brain and any underlying issues that might be contributing to seizures such as infection. Imaging tests are noninvasive and involve lying in a machine to obtain the images.

How is epilepsy from chickenpox treated?

Seizures related to chickenpox don’t always evolve into epilepsy.

If seizures continue after your illness, treatment options include:

  • antiseizure medications
  • brain surgery to remove the affected part of the brain
  • placement of an electrical device in the chest for vagus nerve stimulation or deep brain stimulation

Some people may need treatment their whole lives. Others can avoid episodes by avoiding triggers. And some people may find that their epilepsy goes away with time.

What’s the outlook for people who have epilepsy related to chickenpox?

Febrile seizures are usually limited to the period of illness and don’t typically develop into chronic epilepsy.

The exception is if a child has multiple febrile seizures, which last longer than 10 minutes at a time and affect just one part of the body or happen more than once in a 24-hour period of time. There’s a 10% chance children in this category will develop epilepsy.

Children who have febrile seizures that last longer than 30 minutes have a 30 to 40% chance of developing epilepsy. That said, the condition may not develop for several years after the initial seizure or seizures. In these cases, the seizures may damage the hippocampus and lead to epilepsy or other neurological issues.

Recurrent seizures caused by viral complications, such as encephalitis or meningitis, make up between 1 to 5% of all cases of epilepsy. The outlook will depend on the type of seizures and other health issues a person has. Again, some seizures go away with time. Others require treatment with medication, surgery, or other procedures.

Frequently asked questions

Who’s at risk of developing epilepsy from chickenpox?

People at risk of complications from chickenpox include babies, teens, adults, pregnant people, and people with compromised immune systems. In addition to encephalitis and febrile seizures, this group is at higher risk of bacterial infection, pneumonia, sepsis, bleeding issues, and death.

Can adults receive the chickenpox vaccine?

Yes. While the ProQuad (MMRV) vaccine is only approved for children up to age 12, the Varivax (chickenpox-only) vaccine is approved for children, teens, and adults.

What should I do if I observe a seizure in my child?

Move your child into a recovery position (rolled on their side facing you) and don’t place anything in your child’s mouth. Pay attention to how long the seizure lasts. Call 911 or local emergency services if this is your child’s first seizure, if the seizure lasts for more than 5 minutes, if you believe it’s caused by an infection, or whenever you have other concerns.

Bottom line

Seizures are a possible complication of the chickenpox virus. They’re not a feature of the illness itself. Instead, seizures may be caused by fever or other issues such as the virus spreading to cause a brain infection.

Let a doctor know immediately if you or your child experience seizures during your illness.

While most seizures that occur during chickenpox don’t lead to chronic epilepsy, it’s a possibility. A doctor can provide testing and treatment options for you or your child.

 

Source: healthline.com

Woman suffers horrific injuries falling 100ft off cliff after epileptic seizure in Cornwall

Woman suffers horrific injuries falling 100ft off cliff after epileptic seizure in Cornwall

A 22-year-old woman sustained horrific injuries when she fell 100ft from a cliff path in Cornwall after an epileptic seizure.

Angharad Elliot had been out for a day at the beach with her family in October last year. It wasn’t until Angharad’s mum, Jo, spotted her in a rock pool below the cliff that paramedics were called.

She was badly injured by the fall and spent nine months in hospital following the incident.

Angharad had a cracked skull, a big wound on the front of her head, collapsed lungs, three crushed vertebrae in her spine, her pelvis coming off her spine, multiple fractures in her feet and a ruptured knee ligament.

Cornwall Air Ambulance deployed a helicopter but despite locating Angharad, the aircraft could not land due to steep cliffs on either side.

It had to land in a field high above the beach, and critical care paramedics Lisa Ball and Pete Storer then had to leave their heavy kits bags behind due to uneven terrain and hike down to the beach and scramble across rocks with just their vital drugs and equipment.

But within minutes of them arriving, the ravine where Angharad was lying became flooded with water, and although Lisa and Peter moved her a few metres away, that area soon flooded too.

The paramedics then moved the patient to a nearby ledge.

This remote location left the paramedics with no ability to communicate with the South Western Ambulance Service control room or the helicopter pilot. They could only contact the coastguard via radio but with no sign of the helicopter, waves began to crash over the ledge.

The crew then had to make a snap decision whether to stay with Angharad and her mum as the tide came in or to evacuate, knowing that leaving them would likely lead to their deaths.

The paramedics decided to remain despite the risk to themselves and pinned Angharad down using their bodyweight.

Lisa said: “We were sheltering behind rocks with waves crashing over us all. We were using all our strength to hold them in place, if we didn’t, they would have been washed into the sea.

“The conditions were getting worse, no one would have got into that water and come out alive. The power of the waves would have thrown us against the rocks.

“Pete and I looked at each other, we work together a lot, and we both knew what the other was thinking. We couldn’t leave them.”

Luckily, Angharad was eventually rescued by the Coastguard Search and Rescue helicopter, which winched her to safety, followed by Jo, Lisa and Pete.

Lisa then attended to the patient despite being hypothermic herself, monitoring Angharad’s vital signs and giving her oxygen.

But despite being rushed to Royal Cornwall Hospital, Angharad’s ordeal was not yet over as she then suffered a cardiac arrest while being prepared for surgery.

The fall and her severe injuries ultimately led Angharad to spend nine months in hospital, where she underwent multiple surgeries.

A year on, she still struggles to walk long distances without pain and is waiting on another operation, though it has significantly reduced the number of seizures she suffers every month, from around 20 to just two.

‘If they didn’t come, we would have drowned without a doubt’

Reflecting on her fall, Angharad said: “I don’t remember it at all, I remember the day before and then 10 days later.

“I find it interesting knowing what happened, I’m not scared of it, it doesn’t upset me, I just think it’s amazing that I did survive it and that people helped me, I’m very lucky.

“With severe epilepsy I’ve learnt to deal with things very well.”

Jo added: “Seeing Pete and Lisa, I don’t want to use this word loosely, but they were like angels walking along.

“Those guys came down despite the sea coming in, the extraordinary courage that they showed, and at no point did I get the sense they would leave us. Around 30 seconds after Pete was winched by the helicopter the rock was covered with water.

“I feel very humbled that they cared so much about us. If they didn’t come, we would have drowned without a doubt.”

The two paramedics, Lisa and Peter, have gone on to win the Special Incident Award at the 2022 Air Ambulances UK awards last Monday (14 November), at Edgbaston Stadium in Birmingham.

 

Source: itv.com

Epilepsy Association “Giving Tuesday”

COVID-19 Raises Risk of Seizures, Epilepsy

Nearly 1 in 100 people infected with COVID-19 developed epilepsy or seizures within 6 months of getting sick, a new study says.The risk is greatest among children and among those who were not hospitalized to be treated for COVID-19.

“While the overall risk of developing seizures or epilepsy was low – less than 1% of all people with COVID-19, given the large number of people who have been infected with COVID-19, this could result in increases in the number of people with seizures and epilepsy,” said study author Arjune Sen, MD, PhD, in a press release. “In addition, the increased risk of seizures and epilepsy in children gives us another reason to try to prevent COVID-19 infections in kids.”

Published this week in the journal Neurology, the study evaluated two groups – those infected with COVID-19 and those infected with the flu. Each group had 152,754 people who were followed for 6 months.

 

Those in the COVID-19 group were 55% more likely to develop epilepsy or seizures during that time, compared to those in the flu group. For the COVID-19 group, the incidence of epilepsy or seizures was 0.94%, compared to 0.60% for flu patients. Among children, the incidence was 1.34% among COVID-19 patients and 0.69% for flu patients.

 

Also concerning was the higher rate of epilepsy and seizures among patients with relatively mild symptoms, compared to those who were hospitalized with COVID-19, wrote Wyatt Bensken, PhD, and Terence J. O’Brien, MD, in a commentary published alongside the study. They also said that health care providers who deal with brain and nervous system disorders need to be prepared for an increase in patients. That’s because even though the chance of those experiencing seizures or epilepsy is low, the large number of people infected with COVID-19 could mean a large increase in the number of people who develop epilepsy or seizures.
 

One theory for the findings is that COVID-19 may cause problems with brain function by affecting the brain cells “that make up the lining of blood vessels or by causing inflammation, immune overreaction, or other mechanisms,” according to a summary of the study published by the Center for Infectious Disease Research and Policy.

Study authors said their research was limited by not knowing which variants of COVID-19 infected the patients.

 

 

Source: webmd.com, Lisa O’Mary

Epilepsy Association “Giving Tuesday”

‘Stigma, fear and misperceptions’: How racial disparities affect epilepsy treatment and care for Black Americans

Epilepsy, a brain disorder that causes seizures, is one of the most common conditions that affects the brain. According to the Centers for Disease Control and Prevention (CDC), about 3.4 million people — 3 million adults and 470,000 children — in the United States have it.

However, Black Americans with epilepsy face several challenges in terms of diagnosis, stigma and differences in care based on race. Although an estimated 578,000 Black Americans have epilepsy or a seizure disorder, according to the Epilepsy Foundation, they are more likely to be diagnosed with epilepsy than white Americans. They are also more likely to experience a seizure that continues for five minutes or more without stopping (status epilepticus) and are at increased risk for sudden unexpected death in epilepsy (SUDEP).

Dr. Pooja Patel, neurologist and the director of the epilepsy monitoring unit at Marcus Neuroscience Institute, tells Yahoo Life that “besides certain genetic factors, other causes of higher cases of epilepsy in BIPOC than Caucasians include higher incidence of stroke and traumatic brain injury.”

Although few studies have found differences in rates of epilepsy by race or ethnicity, research also shows strong links between epilepsy and socioeconomic indicators. Dr. Elia Pestana Knight, pediatric neurologist with a specialty in CDKL5 deficiency disorder (CDD) — a rare disorder characterized by seizures that begin in infancy — tells Yahoo Life that “incidence of epilepsy is higher in low-income communities.”

How race influences treatment and care of epilepsy

“Stigma and access to appropriate care are the major factors that impact diagnosis and treatment,” says Patel. “Because of the stigma, fear and misperceptions, there is a lot of delay in care. Even if care is obtained because of emergency purposes, there might be treatment compliance issues, which leads to poor control of seizures and complications from it.”

Research shows that, compared with white people, Black people with epilepsy are less likely to have regular outpatient care and are more likely to use the emergency room for seizure care. They are also more likely to rely on public health insurance programs such as Medicaid and Medicare.

Doctors are also less likely to admit Black people living with epilepsy to the hospital, despite insurance status, and when they are admitted, research shows that doctors order brain and nerve imaging tests for Black people with epilepsy less often than for white people. In addition, Black people with epilepsy may be less likely to receive anti-epileptic medications.

When asked about the underlying reasons for the disparities of care, Knight acknowledges that it’s a “complex question.” She says, “Some studies have documented more ER visits, more hospitalizations, more primary care visits, less visits to the neurologist and less adherence to treatment by nonwhites compared to whites with epilepsy.”

Knight also points to one study that looked at socio-demographic disparities of care for people with epilepsy and found that where they seek care, rather than patient characteristics, matters. The study found that Black people, as well as Hispanics, had higher rates of generalist visits and hospitalizations and lower rates of visits with epilepsy specialists — that’s important since, according to the CDC, the use of epilepsy medication to help control the condition is higher among adults who have seen an epilepsy specialist than among those who haven’t. Knight emphasizes that “health care providers need to ensure that up-to-date diagnosis and treatments are offered equally to all.”

Another small study found multiple barriers to epilepsy care in the Black community — namely, financial resources, epilepsy education, lack of communication with doctors and lack of social support.

Mom of three Whitney Mitchell, whose child Havilah was diagnosed with CDKL5 deficiency disorder, a rare form of genetic epilepsy, shared with Yahoo Life that her husband’s background and experiences as a Black man “definitely were a factor in access to Havilah’s treatment.” She says, “As an African American man, he was much more hesitant to question medical authority, which was a big thing in the beginning when there were doctors pushing certain medications and treatments on us. I think he had been raised that being too hesitant of medical advice can have adverse effects on your health. So that really affected our access to care and treatment, especially having a child with a rare disease.”

Mitchell says that even though dealing with their child’s epilepsy diagnosis was new to both of them, “I think it was much more foreign to him, and I think a lot of that was heavily influenced by the culture he was raised in and the perception of medical professionals.”

For others, transportation is yet another challenge when trying to access epilepsy care. Stephanie Gowdy knows that firsthand. Gowdy had febrile seizures as a baby, which eventually stopped, only to return when she was an adult and pregnant with her second child. “I began having tonic-clonic seizures and they told my body I was in labor, so at 22 weeks I was three centimeters dilated and placed on strict bed rest for three and a half months,” she tells Yahoo Life. “During those three months, I was diagnosed and I have been having seizures ever since. Since this time, I have undergone many studies to capture my seizures and had brain surgery in an attempt to control them.”

Gowdy says that while she has been fortunate to have access to treatment, her main obstacle is transportation to her doctor appointments. “I am legally blind and with seizures,” she says. “I am unable to drive, and most of my doctors are a substantial distance” from where she lives.

Smiling mom, who has epilepsy, stands next to her two young children in front of a green hedge.
Stephanie Gowdy, pictured with her two kids, is legally blind and has seizures. She says finding transportation to her doctors’ appointments is challenging. (Courtesy of Stephanie Gowdy)

Resources for Black people living with epilepsy

Along with access to epilepsy specialists and telemedicine to improve access to care, Patel emphasizes that “education is the key to encouraging the BIPOC community and changing attitudes for people with epilepsy to seek timely and proper care. Increasing awareness about epilepsy as a medical condition and removing the stigma can further help achieve better care.”

Experts say there are several resources for people with epilepsy:

  • The Epilepsy Foundation, through a multicultural outreach program, has tried to reach many people in the BIPOC community to spread awareness and serves as a resource for people in need of treatment. The foundation also has a 24/7 helpline to provide support to those with epilepsy.
  • The digital health platform Epsy is focused on empowering patients with seizures and epilepsy, along with caregivers and health care providers.
  • The Epilepsy Agency of the Big Bend (EABB) in Florida works to reduce barriers to care for those whose lives are affected by epilepsy, particularly individuals and families experiencing poverty.

Social support is also key. “Taking from other medical fields, minorities have better treatment and diagnosis, acceptance and adherence to medications when they share their experience with somebody that has experienced the process,” says Knight.

She also points to patient navigator systems that are used for patients with kidney failure and expecting kidney transplants, for example. Research shows that patient navigators help reduce disparities and improve outcomes, such as after surgery. “There may be other ways, but this is a system that works when patients are wary or scared of epilepsy surgery,” she says.

 

Source: yahoo.com, Taayoo Murray

Epilepsy Association “Giving Tuesday”

CBD OIL’S ADVANTAGES AND USAGE

The lesser-known offspring of the Cannabis Sativa plant is known as cannabidiol or CBD. Unlike marijuana, CBD does not contain THC. It is responsible for giving that “high” to the users, so it is safe in this regard. The plant, which has roots in Central Asia, is thought to have been used for rituals or medicine. It happened for the first time around 750 B.C. But there are other estimates as well.

There is extensive discussion about whether CBD or THC is psychoactive. THC can raise anxiety; It is unclear whether CBD has any effect on lowering it. THC is addictive and makes a person dependent on it. It triggers cravings, whereas CBD is amazing to help recover from the addiction because of the lack of THC.

 

Researchers and consumers alike are interested in CBD boxes. Studies show that CBD oil protects against multiple diseases that are deeply discussed. But certain scientific pieces of evidence make this statement vague and support the situation otherwise. The projected revenues are quite high, that is, $20 billion in the US in the next three years.

 

Continue reading the main story Hemp is cannabis with less than 0.3 percent THC. Last year’s Farm Bill made hemp legal under federal law, but it also kept the Food and Drug Administration in charge of products made from cannabis.

ADVANTAGES AND USES OF CBD OIL

CBD oil proponents assert that it helps people with various health issues. Researchers have been attempting to study CBD more as it gained popularity, but there have been few human trials. Currently, not enough evidence is available to back up its numerous claims regarding health.

The advantages and uses of CBD oil are deeply discussed,

ANXIETY

CBD may be able to treat anxiety disorders13, but there haven’t been many studies looking at how CBD relieves anxiety in humans.

In an event, almost 57 men consumed their CBD oil without it. The researchers’ main aim was to judge heart rate and blood pressure to check the anxiety level before and after consuming CBD oil. Along with the heartbeat and blood pressure tests, a mood scale was incorporated into the experiment to judge anxiety levels based on mood changes. The results were what the researchers expected. The anxiety levels were lower in the men who consumed CBD oil. Whereas those who did not consume CBD had higher anxiety levels. Due to the small sample size and the fact that this trial only included men, additional data are required to determine whether CBD has the same effect on women.

 

Another scientific and authentic study found that CBD reduced adolescents’ social ADS (anxiety disorder symptoms). Although the study was well-designed, only 37 people participated.

 

SCHIZOPHRENIA

Positive psychotic symptoms (hallucinations or delusions) were reduced by 1000 milligrams (mg) of CBD oil per day in 88 people with schizophrenia who were already taking medication. Negative psychotic symptoms (such as a lack of interest in others or blunt affect) did not differ significantly between CBD oil and placebo. Also, keep in mind that the trial participants were already taking prescription medications to treat schizophrenia, so CBD oil was studied as an additional treatment.

Observe that items with huge measures of THC might intensify the side effects of psychosis, schizophrenia, and distrustfulness.

ADDICTION

The preliminary effects of CBD on addiction have been the subject of mixed research.

Benefits from CBD at 400 and 800 milligrams (mg) doses were demonstrated in a small randomized controlled trial involving fifty people with heroin use disorder. Compared to a sugar pill called a placebo, people who took CBD had less anxiety and fewer cravings for heroin. Larger studies are required to determine whether CBD oil is safe and effective.

SEIZURES

In June 2018, the CBD oral solution Epidiolex was approved by the Food and Drug Administration (FDA). Epidiolex is not an over-the-counter medication but rather a prescription drug.

Two uncommon forms of epilepsy in children under two are treated with Epidiolex: Lennox-Gastaut syndrome and Dravet syndrome. In the first year of life, these rare genetic disorders cause seizures that last a lifetime. It was also approved in 2020 for treating tuberous sclerosis complex, a rare genetic condition in which benign tumors spread throughout the body and frequently accompany seizures. All three of these conditions can be treated with Epidiolex in people over the age of one. CBD’s efficacy in treating seizures, in addition to these three conditions, is unknown. Even with Epidiolex, it is unclear whether CBD or another factor is responsible for the anti-seizure effects.

Remember that Epidiolex is not a nutritional supplement. A medical professional’s prescription is required for this. On the other hand, CBD products are not standardized or regulated. Additionally, their efficacy in treating seizures has not yet been demonstrated.

 

Source: jetsweekly.com, Moana Snow

Epilepsy Association “Giving Tuesday”

Home She Slays National Epilepsy Day: Fatima Sana Shaikh opens up about her struggle with epilepsy, says she has learnt to “live around it” SHE SLAYS National Epilepsy Day: Fatima Sana Shaikh opens up about her struggle with epilepsy, says she has learnt to “live around it”

Epilepsy is a neurological condition that affect your day-to-day life. Fatima Sana Shaikh recently opened up about her struggle with it.

Being in the limelight comes with its own set of challenges, one of them being stigmatization. However, many celebrities have come forward with their struggles in life, whether it’s mental health or a disease like epilepsy. According to the World Health Organization (WHO), out of the 50 million people living with epilepsy, 10 million people are from India. Bollywood isn’t exempt from this statistic, as Fatima Sana Shaikh has come forward with her story about living with epilepsy.

For the unversed, epilepsy is a neurological condition that affects the brain activity. It causes period of unusual behaviour or seizure, sensations, and occasionally loss of consciousness. Scroll down to know Fatima’s struggle with epilepsy and what she did to overcome it.

Fatima Sana Shaikh talks about her struggle with epilepsy

The “Dangal” actor communicated with her fans during a “ask me anything” session on social media. When asked how she is dealing with it, the actor responded, “I have a good support system. Family, Friends and Bijlee. Some days are good, some not so great.”

Fatima Sana Shaikh
Fatima Sana Shaikh opens up about her struggle with epilepsy. 

Answering another question, she shared that she was diagnosed with epilepsy during the training of Dangal. “I got an episode and woke up straight at the hospital. Was in denial first (5 years) and now I have learnt to embrace it and work and live around it.” Explaining how serious and disabling the condition is, the 30-year-old shared that epilepsy can be “fatal and leave you with major disabilities.”

Further elaborating on how one should deal with the condition, she says that one should try to be positive and find peace in life. It will make the journey much easier. She also revealed that epilepsy prevents her from doing certain activities such as driving, swimming and being alone.

How does she handles epilepsy? Fatima clears myths

When someone asked her to explain what sort of seizures she experiences, she wrote that she suffers from tonic-clonic seizure, absence seizure, clonic seizure, and focal seizure. She further explained that her recovery time depends on the kind of seizure she is experiencing. “If it’s a full blown (seizure), then could take the whole day. Because then I get migraines, body pain, I am zoned out, can’t understand anything, confused. If it’s a absence, I could recover from it in 20 minutes or even less.”

She says stress, lethargy, flashlights, dehydration and lack of sleep are some of the common factors that trigger seizures. While these episodes of seizures can take a toll on someone’s health and disrupt the normal functioning, here are some ways she suggests to manage anyone who may be suffering from it:

  • Don’t restrain the person
  • Don’t put anything in the mouth
  • Turn them to one side, so that if they throw-up, they do not choke on it
  • Time the seizures
  • Move sharp objects away
  • Take the person to the hospital if it goes on for more than 5-10 minutes
  • Stay calm and do not panic

 

Source: healthshots.com, Arushi Bidhuri

Epilepsy Association “Giving Tuesday”

Epileptic seizures can occur like clockwork. But what sets the clock?

One in 26 people in the United States will develop epilepsy at some point in their lives and that list is growing with 150,000 new cases of the disease reported every year. An estimated 3.4 million Americans and 65 million people worldwide currently live with epilepsy.

The condition impacts people of all ages and races. It can result from a number of underlying conditions, such as head trauma, or occasionally a person may simply be a victim of hereditary coincidence. Sometimes there is absolutely no explanation for it.

For many who suffer from epilepsy, seizures occur like clockwork. However, everyone has a different clock and while seizures can be triggered by many events, why different patients experience different seizure cycles is unknown.

In order to give people with epilepsy a better understanding of how and why their seizures occur and perhaps to better recognize the early warnings, a new study led by researchers from Rice University and the University of California, San Francisco (UCSF), published in the Proceedings of the National Academy of Sciences, sought to formalize how, exactly, those clocks tick.

“We developed a new statistical model to explicitly capture the effect of factors that may drive transitions in seizure risk,” said Rice alumna Sharon Chiang, a clinical instructor and research fellow at UCSF. “We looked at anti-seizure medications and different triggers like illness and menstrual cycles. Those are some of the factors commonly thought to increase or decrease seizure risk.”

The relationship between cycle length and age was an interesting finding. Chiang and her cohorts discovered that there were shorter cycles in older age groups and longer cycles in younger epileptics.

“A shortening of cycle length with age may have potential ramifications in future clinical practice,” she said.

In 2019, researchers from Rice analyzed patients’ seizure diaries to assess their seizure risks and looked at brain scans to discover markers for patients with epilepsy most likely to benefit from brain surgery.

The year prior, researchers from UCSF completed a similar study to the new paper where they discovered monthly cycles of brain activity in epilepsy patients that were linked to seizures. That finding suggested that clinicians could soon be able to predict when patients are most likely to have seizures, allowing patients to plan around these brief but potentially dangerous events.

The new work aims to emphasize the importance of logging seizures on a daily and long-term basis. This will aid in the establishment of individual chronotypes, or rhythms, for patients who have seizures in cycles and want to understand why they happen when they do, what may trigger them, and how to best treat them.

An online seizure diary simplifies the process for patients while also providing the researchers with a wealth of data to mine for their statistical dynamical systems models, with the “dynamic” part capturing change over time. Co-author Robert Moss founded Seizure Tracker, which provides tools to help patients, doctors and researchers understand the relationships between seizure activity and therapies that will improve patient care.

The logs of over 1,000 patients, ranging in age from two months to 80 years, were used to help the team model the relationship between “attractor states,” internal and/or external events such as the start of a new medication or illness, and the peaks and valleys of seizure activity in an individual patient for the current study.

“The purpose of this model is to try to guide the patient and the doctor, in particular,” said Marina Vannucci, the Noah Harding Professor of Statistics at Rice’s George R. Brown School of Engineering. “We want to help doctors say, ‘OK, this medication is really important for this patient with this type of seizure,’ and control their seizures in a better way…Calm stretches between seizures seem to get shorter for patients as they get older. Triggers and age are the two factors we found to be significant for the change of attractor states. The data shows that with age, patients have shorter cycles. It seems like an obvious thing, but the link had not been formally established.”

Vannucci said the new study is the product of research that began in 2017 where doctors and their patients sat down to discuss the frequency of their seizures. Were they going up, down or remained the same?

Those discussions resulted in a 2018 Epilepsia Open study that suggested a Bayesian model could better define seizure risks for patients. From there, Vannucci said the team incorporated attractors and other covariates like medications to build the model detailed in the current study.

“We hope this study is the best of all and the most helpful for patients and doctors.”

 

Source: zmescience.com, Jordan Strickler

Epilepsy Association “Giving Tuesday”

Frequently Asked Questions About Epilepsy – Part 3

Health and Safety Concerns

Are there special concerns for women who have epilepsy?

Women who have epilepsy face special challenges. Hormonal changes can cause some women with epilepsy to have more seizures during their period.

For women with epilepsy, there are also special concerns about pregnancy, because having a seizure and taking certain drugs during pregnancy may increase the risk of harm to the baby. Women can take the following steps before and during pregnancy to lessen these risks.

  • If you are a woman with epilepsy who plans to get pregnant, talk with your health team about how to best care for yourself and your baby.
  • Learn more about issues facing women with epilepsy and how to improve health on the Epilepsy Foundation’s website, Women and Epilepsy.

Can a person die from epilepsy?

Most people with epilepsy live a full life. However, the risk of early death is higher for some. We know that the best possible seizure control and living safely can reduce the risk of epilepsy-related death.

Factors that increase the risk of early death include:

  • More serious health problems, such as a stroke or a tumor. These conditions carry an increased risk of death and may cause seizures.
  • Falls or other injuries that happen because of seizures. These injuries can be life-threatening.
  • Seizures that last over 5 minutes. This is a condition called status epilepticus. Status epilepticus can sometimes happen when a person suddenly stops taking seizure medication.

Rarely, people with epilepsy can experience Sudden Unexpected Death in Epilepsy (SUDEP). SUDEP is not well understood and experts don’t know what causes it, but they suspect that it is sometimes due to a change in heart beats (rhythm) during a seizure. Sudden death due to heart rhythm changes also happens in people who do not have seizures.

The risk of sudden death is larger for people with major uncontrolled seizures.

If I have epilepsy, can I still drive a car?

Most states and the District of Columbia will not issue a driver’s license to someone with epilepsy unless that person provides documentation that he or she has not had a seizure for a specific amount of time. The seizure-free period ranges from a few months to over a year, depending on the state.

Some states need a letter from your health provider to issue a license when a person has seizures that:

  • Don’t distract the person from driving.
  • Happen only during sleep. These are called nocturnal seizures
  • Have warning signs that alert the person that a seizure might happen. Sometimes a person feels strange before a seizure. This is called an aura.
 If I have epilepsy, can I exercise and play sports?

Sometimes people with epilepsy worry that exercise or sports may worsen their seizures.

Exercise is rarely a “trigger” for seizure activity. In fact, regular exercise may improve seizure control. Safely playing sports can also be great for your physical, mental, and emotional well-being.

It is always important to avoid sports-related injuries that can increase the risk of seizures.

 

Source: cdc.gov

Epilepsy Association “Giving Tuesday”

Frequently Asked Questions About Epilepsy – Part 2

Preventing and Managing Epilepsy

How can I prevent epilepsy?

Sometimes we can prevent epilepsy. These are some of the most common ways to reduce your risk of developing epilepsy:

  • Have a healthy pregnancy. Some problems during pregnancy and childbirth may lead to epilepsy. Follow a prenatal care plan with your health care provider to keep you and your baby healthy.
  • Prevent brain injuries.
  • Lower the chances of stroke and heart disease.
  • Be up-to-date on your vaccinations.
  • Wash your hands and prepare food safely to prevent infections such as cysticercosis.

How is epilepsy diagnosed?

A person who has a seizure for the first time should talk to a health care provider, such as a doctor or nurse practitioner. The provider will talk to the person about what happened, and look for the cause of the seizure. Many people who have seizures take tests such as brain scans for a closer look at what is going on. These tests do not hurt.

How is epilepsy treated?

There are many things a provider and person with epilepsy can do to stop or lessen seizures.

The most common treatments for epilepsy are:

  • Medicine.  Anti-seizure drugs are medicines that limit the spread of seizures in the brain. A health care provider will change the amount of the medicine or prescribe a new drug if needed to find the best treatment plan. Medicines work for about 2 in 3 people with epilepsy.
  • Surgery.  When seizures come from a single area of the brain (focal seizures), surgery to remove that area may stop future seizures or make them easier to control with medicine. Epilepsy surgery is mostly used when the seizure focus is located in the temporal lobe of the brain.
  • Other treatments. When medicines do not work and surgery is not possible, other treatments can help. These include vagus nerve stimulation, where an electrical device is placed, or implanted, under the skin on the upper chest to send signals to a large nerve in the neck. Another option is the ketogenic diet, a high fat, low carbohydrate diet with limited calories.

Who treats epilepsy?

Many kinds of health providers treat people with epilepsy. Primary care providers such as family physicians, pediatricians, and nurse practitioners are often the first people to see a person with epilepsy who has new seizures. These providers may make the diagnosis of epilepsy or they may talk with a neurologist or epileptologist.

A neurologist is a doctor who specializes in the brain and nervous system. An epileptologist is a neurologist who specializes in epilepsy. When problems occur such as seizures or side effects of medicine, the primary health provider may send the patient to a neurologist or epileptologists for specialized care.

People who have seizures that are difficult to control or who need advanced care for epilepsy may be referred to an epilepsy centers. Epilepsy centers are staffed by providers who specialize in epilepsy care, such as

  • Epileptologists and neurologists.
  • Nurses.
  • Psychologists.
  • Technicians.

Many epilepsy centers work with university hospitals and researchers.

How do I find an epilepsy specialist?

There are several ways you can find a neurologist or an epileptologist near you. Your primary care or family provider can tell you about types of specialists. The American Epilepsy Society provides a list of its member neurologists and epilepsy specialists, including epileptologists. The National Association of Epilepsy Centers also provides a list of its member centers, organized by state.

What can I do to manage my epilepsy?

Self-management is what you do to take care of yourself. You can learn how to manage seizures and keep an active and full life. Begin with these tips:

  • Take your medicine.
  • Talk with your doctor or nurse when you have questions.
  • Recognize seizure triggers (such as flashing or bright lights).
  • Keep a record of your seizures.
  • Get enough sleep.
  • Lower stress.

 

Source: cdc.gov

Epilepsy Association “Giving Tuesday”

Frequently Asked Questions About Epilepsy – Part 1

Epilepsy Basics

What is epilepsy? What is a seizure?

Epilepsy, which is sometimes called a seizure disorder, is a disorder of the brain. A person is diagnosed with epilepsy when they have had two or more seizures.

seizure is a short change in normal brain activity.

Seizures are the main sign of epilepsy. Some seizures can look like staring spells. Other seizures cause a person to fall, shake, and lose awareness of what’s going on around them.

How long do seizures usually last?

Usually, a seizure lasts from a few seconds to a few minutes. It depends on the type of seizure.

What are the major types of seizures?

Sometimes it is hard to tell when a person is having a seizure. A person having a seizure may seem confused or look like they are staring at something that isn’t there. Other seizures can cause a person to fall, shake, and become unaware of what’s going on around them.

Seizures are classified into two groups.

  • Generalized seizures affect both sides of the brain.
  • Focal seizures affect just one area of the brain. These seizures are also called partial seizures.

A person with epilepsy can have more than one kind of seizure.

If I have a seizure, does that mean I have epilepsy?

Not always. Seizures can also happen because of other medical problems.

These problems include:

  • A high fever.
  • Low blood sugar.
  • Alcohol or drug withdrawal.

 What causes epilepsy?

Epilepsy can be caused by different conditions that affect a person’s brain. Some known causes include:

  • Stroke.
  • Brain tumor.
  • Brain infection from parasites (malaria, neurocysticercosis), viruses (influenza, dengue, Zika), and bacteria.
  • Traumatic brain injury or head injury.
  • Loss of oxygen to the brain (for example, during birth).
  • Some genetic disorders (such as Down syndrome).
  • Other neurologic diseases (such as Alzheimer’s disease).

For 2 in 3 people, the cause of epilepsy is unknown. This type of epilepsy is called cryptogenic or idiopathic.

Is epilepsy common?

Epilepsy is one of the most common conditions affecting the brain.

When counting both children and adults in the United States:

  • About 5.1 million people in the United States have a history of epilepsy.
  • About 3.4 million people in the United States have active epilepsy

 

Source: cdc.gov

Epilepsy Association “Giving Tuesday”

Atonic Seizures

Overview

A seizure happens when electrical activity in the brain surges suddenly. Atonic seizures are a type of seizure that causes sudden loss of muscle strength. These seizures are also called akinetic seizures, drop attacks or drop seizures.

The sudden lack of muscle strength, or tone, can cause the person to fall to the ground. The person usually remains conscious, and may not always fall down. Their head may drop, their eyelids may droop, and they may drop anything they were holding.

These types of seizures often begin in childhood and may last into adulthood. Sometimes they are linked to other conditions, such as Lennox-Gastaut syndrome.

Symptoms

Atonic seizures result in a sudden loss of muscle strength while the seizure is occurring. Other symptoms may include:

  • Going limp and falling to the ground
  • Remaining conscious
  • Experiencing a brief loss of consciousness
  • Drooping eyelids
  • Head nods
  • Jerking

Because these seizures often result in a fall, the patient may need first aid once the seizure is over. Some people who have these seizures often may choose to wear protective gear, like a helmet.


Causes and Risk FactorsThe cause of atonic seizures is often unknown. Some patients may be more likely to have seizures because of changes in their genes.

Atonic seizures most often affect children but can occur in patients of any age.

Rapid breathing (hyperventilation) and flickering lights can trigger seizures.

Diagnosis

The most useful test in diagnosing seizures is an electroencephalogram (EEG). This records electrical activity in the brain. EEG can show unusual electrical activity patterns. Different types of seizures can be identified with these patterns.

Magnetic resonance imaging (MRI) and computed tomography (CT) scans may be used to study the condition. These images can also show where the seizure is happening in the brain. The scans can also rule out other possible causes such as a stroke.

Treatment

Patients may need to wear helmets to prevent head injuries during seizures if falling is common.

Medication is the most common treatment. Anti-seizure (or anti-epileptic) medications can be very helpful. It may take a few tries to find the right drug and the right dose. The doctor will monitor for side effects to find the best option. These medications include:

  • Ethosuximide (Zarontin) is most often used as the first drug treatment.
  • Valproic acid (Depakene) is another option. It is not recommended for women who are pregnant or want to become pregnant as it can increase the risk of birth defects.
  • Lamotrigine (Lamictal) has fewer side effects than the other two medications but may also be less helpful.
  • Clobazam (Onfi).

Certain types of seizures may be controlled with a ketogenic diet. This is a high-fat, low-carbohydrate diet used most often for children who have not responded to medications.

A vagus nerve stimulator (VNS) is sometimes implanted and used along with anti-epileptic medication to reduce seizures. The VNS is a device placed under the skin of the chest that sends electrical energy through the vagus nerve in the neck to the brain.

 

Source: cedars-sinai.org

RECENT NEWS