7 posts tagged “letitia”

In her own words: Letitia shares about her new brain for Epilepsy Awareness Month

Posted November 16th, 2016 by

Have you met Letitia (Letitia81) from the epilepsy community? Four years ago, her research on PatientsLikeMe led her to the brain surgery that forever changed her life — she’s now seizure-free after three decades.

Things are much different now for Letitia, and she’s written all about her before and after in a recent article for WBUR (Boston’s NPR news). And as it’s National Epilepsy Awareness Month, we’re passing along her firsthand account of her new normal below. Check it out.

After 3 Decades of Seizures, Life with My New Brain

By Letitia Browne-James

I was 31 when I began to think with my new brain.

I’d been diagnosed with epilepsy when I was 11 and struggled with forgetfulness, interruptions in my thoughts and a lack of focus my entire life. I didn’t know that these were classic signs of brain fog, a symptom of epilepsy. I knew that my classmates seemed to grasp math and history more quickly than I did. Sometimes, I felt like I couldn’t understand things completely, no matter how many times I read or listened to my teachers’ explanations. It was a terrible feeling.

I had seizures, too, and they worsened as I grew older, appearing more frequently, always without warning. I had them at church, in class, at work, parties, weddings and while walking around the lake in my neighborhood. I often injured myself during these episodes. About four years ago, my doctor suggested that I would be an excellent candidate for brain surgery to treat my epilepsy. In August 2012, a surgeon removed a piece of my left temporal lobe the size of a sugar cube.

I didn’t know I had brain fog until it disappeared. Then I began to discover what I could do.

I was an infant when I had my first seizure, according to my parents. I had been hospitalized for asthma. After that medical crisis, life was normal until my parents noticed that sometimes I stared into space, didn’t respond verbally, and occasionally drooled. This behavior became more frequent when I was about 10. At 11, I was diagnosed with grand mal seizures and I started taking epilepsy medicine. It did not control the seizures, even when my neurologists increased the dosage and switched me to other anti-epileptic drugs such as Tegretol and phenobarbital — I had allergic reactions to both — and Dilantin.

In college, I still struggled academically and physically because of the seizures. I fell and hurt myself, bit my tongue and other parts of my mouth. I have permanent marks from injuries, including a chipped front tooth from a fall. The aftereffects lasted for days or weeks. I sometimes needed to sleep for a day and a half to recuperate. These side effects, combined with the rigor of college courses, proved challenging. I was also hospitalized several times, missed many days of classes, and was not always fully alert in school. But I have always been a fighter who succeeds in spite of obstacles. My academic performance improved during the last two years of college and my professors introduced me to scholarly research. Earning a doctorate became my long-term goal. I graduated with a bachelor’s of science in psychology with a B average.

Two years after college, I took the Graduate Record Examination because I planned to complete a master’s degree in counseling. I struggled mentally and physically while preparing for — and taking — the test, and earned low GRE scores. Still, I received contingency acceptance into a top graduate program. I had to pass my first-semester classes to end my contingency status. I not only passed, but had a 4.0 GPA by the end of that semester. I was ecstatic. But the challenges of living with epilepsy continued throughout graduate school. The seizures were becoming more violent and frequent, even though I took my medication regularly. I was desperate to control them.

Throughout my childhood, my MRI and electroencephalogram, or EEG, exams indicated that the seizures occurred in the left temporal lobe of my brain. But in my early 20s, they stopped appearing on those tests. I later learned that I had developed refractory epilepsy, a type of epilepsy that is particularly hard to diagnose and treat. Unless the patient has a seizure during an exam, test results and brain anatomy appear normal. In my professional training, I learned a lot about somatoform disorders: physical symptoms that mimic illnesses such as seizures, heart attacks, strokes but do not have physical explanations. I wondered if my seizures were psychosomatic.

 

“Since my surgery, I’ve started experiencing mental, spiritual, emotional and physical clarity unlike any I’d ever known.”

 

I found a compassionate psychiatrist; she was very personable, patient-centered and a Christian like me. After a few visits, she said, “I cannot explain what is happening neurologically, but I can tell you that those seizures are not psychosomatic.” She noticed that my seizures were causing me great anxiety and prescribed Xanax. She was right. I constantly feared having a seizure. Everyone around me was supportive, but I felt embarrassed, upset and anxious. The Xanax lessened my anxiety, and I am grateful to my former psychiatrist for her help.

I encouraged my counseling clients to become informed patients and play an active role in health care for themselves and their loved ones. I did the same. I researched my condition and found a website called PatientsLikeMe. I read the stories of other people with epilepsy. I learned about other tests and treatments — including brain surgery — that helped patients with epilepsy find relief or cure from seizures. I learned about “patient-centeredness” — working with health care professionals who truly value their patients’ input about their care and help them choose the treatment options that are right for them.

On PatientsLikeMe, I learned about both the 72-hour EEG and epileptologists, neurologists who specialize in epilepsy that is hard to diagnose and treat. None of my neurologists had mentioned this specialized doctor. I made an appointment immediately to see an epileptologist, and that was when my life started to change.

My new doctor ordered a five-day inpatient EEG on the epilepsy monitoring unit in a local hospital, where he and his team induced seizures while a machine recorded the activity in my brain to see precisely where the seizures originated. The epileptologist and his team determined that I could benefit from brain surgery. At the hospital where I would have the operation, I underwent a series of pre-surgical tests and passed them all. I began to count down to my surgery date. I was so excited by the prospect of ending my seizures that my pastor later said, “Letitia was acting like she was going to Disney World or something.”

Research has shown that epilepsy surgery is relatively safe. Most patients no longer have seizures afterwards. Pre-op testing can predict how patients will fare. Temporal resections — where the piece of the brain’s temporal lobe that is causing the seizures is removed — are the most common type of epilepsy surgeries.

I had a left temporal lobectomy on Aug. 16, 2012. My surgeon removed the small part of my brain through a tiny incision. My operation was very successful. I haven’t had a seizure since, and my doctors don’t expect me to have another seizure ever again. After my surgery, I had a severe headache for about a month as my brain and head healed. I felt like I had been hit in the head with a hammer. I had to spend most of that time in bed because of the pain and sleepiness from the pain meds.

I am still getting to know myself post-epilepsy. Not only is my brain free from the misfiring electricity that caused seizures, but my mind and body are free from the long-term effects of anti-epileptic medications.

Since my surgery, I’ve started experiencing mental, spiritual, emotional and physical clarity unlike any I’d ever known. That feeling became more apparent when I went back to school two years ago to pursue my doctorate in counselor education and supervision. For the first time in my academic life, I can learn and study without the fuzziness of brain fog and the challenges of epilepsy and medications. I can read and understand material much faster and with greater depth than before. I am maintaining a 3.9 GPA in my doctoral program and expect to finish in 2018.

I share my story openly and frequently, not just with epilepsy patients and their loved ones, but with all patients. I have learned that some of the physical, emotional and mental agony that I faced with seizures occurs across diseases. In particular, many patients suffer from brain fog and the adverse effects of medicine. Unfortunately, some, like me, may not know if what they are experiencing is specific to the disease — or what their lives could be like without illness or medication.

I told my story to the family of a young girl who also suffered from epilepsy. She and her family eventually decided to seek brain surgery. (She required three operations.) She’s now a seizure-free teenager. Mostly importantly, she is living without seizures at a much younger age than I did.

When I was a child, my parents didn’t let me ride my bike for a few weeks after I had a seizure. As an adult, I didn’t ride much. I had to give up driving when my seizures became more frequent. Now I drive again and I bike regularly for fun and exercise. I’m very grateful for my new brain.

 

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Epilepsy Awareness Month: The value in helping others

Posted November 6th, 2015 by

It’s November, which means it’s Epilepsy Awareness Month. During our #NotAlone campaign, we shared how PatientsLikeMe member Letitia’s experience on the site helped her feel less alone in living with epilepsy.

Letitia (Letitia81), a member of our 2014-2015 Team of Advisors, explains:

“I enjoyed connecting with others suffering from seizures and exchanged ideas about diagnostic tools such as the 72 hour EGG, treatments, triggers and the like. The most beneficial data that I found on this site was learning about epileptologists and more about epilepsy surgery. Prior to finding out about such a specialists, I continued to use the ineffective treatments given to me by general neurologists for 21 years. After doing some more research on the epileptology, I fired my neurologist and went to see the epileptologist in my area, who was able to perform special testing to accurately diagnose and recommend epilepsy surgery for my condition. As a result, I underwent pretesting last year for epilepsy surgery and after successfully passing all pre-test, I had my surgery (Left Temporal Lobectomy) on August 16, 2012 and have been seizure free ever since! My surgery was very successful and the chances of me having seizures again is very unlikely. I’ve made it my passion to share my story and resources with others who are suffering and/or know someone who is suffering from uncontrollable seizures and epilepsy.”

But Letitia is not alone in her experience with other members of the epilepsy community, and there are many PatientsLikeMe members who understand the value in connecting with and learning from others who understand what they’re going through.

 “Being a member of a meaningful team is time well spent. I can still contribute in some way to the greater good. It means that there are still things I need to do and be a part of despite my challenges. For anyone who has an illness or disability, you have to widen your world to help others. That is what ultimately will help you. When I was at my very worst, my husband told me I needed a new hobby. I was in medical offices 2-3 times a week, and now it is once a month. That is progress I can see!” – Becky (Rebelor), also a member of our 2014-2015 Team of Advisors, who is living with epilepsy.

“I joined [PatientsLikeMe] because I didn’t want to feel alone anymore. Simply put. And I know that I could be helpful with my life experience of having epilepsy to someone else just like me.” – PatientsLikeMe epilepsy member

“I wish I had found [PatientsLikeMe] years ago. It could have been a huge help to me during the worst years. My seizures are now controlled using a mixture of medications. Now I hope to help people who are still in those dark times.” – PatientsLikeMe epilepsy member

Are you living with epilepsy? During the month of November – and year-around – check out what the Epilepsy Foundation is doing to promote epilepsy awareness and help those living with epilepsy.

You can also connect with more than 9,800 others like you on PatientsLikeMe, and share experiences with more than 10,800 others in the epilepsy forum.

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Getting to know our Team of Advisors – Letitia

Posted June 12th, 2015 by

You might recognize Letitia from her Patient Voice video and her PIPC guest blog, but did you know she’s also a member of the PatientsLikeMe Team of Advisors? Below, read what she had to say about living with epilepsy, her views on patient centeredness and all of her advocacy work.

About Letitia (aka Letitia81):
Letitia is a Licensed Mental Health Counselor in Florida and a National Certified Counselor specializing in mental health and marriage and family issues, who was diagnosed with epilepsy at a young age. Letitia consulted with doctors across different disciplines both nationally and internationally and did not find an effective treatment until she found out about epileptologists on PatientsLikeMe. Through consultations, she realized she was a good candidate for brain surgery and she underwent left temporal lobectomy August 16, 2012 and has been seizure free ever since. She successfully weaned herself off of Keppra this month under her doctor’s supervision.

Letitia is very passionate about giving back to others, and recently met a young epileptic girl and inspired her to undergo the same life changing surgery, and so far she’s met with great results. In addition to helping the young girl and her family, people contact her regularly from all over to consult about their or a loved one’s seizure condition and she’s always willing and delighted to help. Letitia is passionate about research and believes in the power of research to positively change the quality of life (mind, body and spirit), for those living with epilepsy and other chronic conditions.

Letitia on patient centeredness:
“It means that the treatment is individualized based on the patient’s (or research participant’s) unique condition/situation as well as their opinions regarding their health.”

Letitia on the Team of Advisors:
“Being a part of the team of advisors has been an invaluable experience! It has allowed me to work with other “rock star” patient advisors and PatientsLikeMe staff that are just as passionate as I am about changing health care, including research to be more patient-centered for all patients. This experience has also given me exposure that I did not imagine before to share my story, encourage, and inspire patients and caregivers. Additionally, I have been able to network with professionals from many disciplines about the value of the patients’ voice! I have heard from many patients and caregivers from different parts of the country and the world! They reached out to me with questions, for guidance, to thank me for sharing my story, and to share their stories with me. I am so humbled that they felt comfortable sharing their stories with me and looked to me as an “expert” for advice. I guess I should not be too surprised by this since I am not only a patient that can relate to their experience, but I am also a professional counselor. I have been blessed with the gift of showing empathy and compassion to others in my career. Finally, this experience, particularly working on the best practice guide for researchers fits nicely into my current professional endeavor of pursuing a Ph.D. in counselor education, with an emphasis on counseling and social change. Social change involves advocacy and creating innovative ways to improve humanity!”

Letitia on advocacy:
“I am very passionate about advocacy work! Advocacy has been a huge focal point in my role as a professional counselor. I am currently a clinical manager for a large mental health and substance abuse agency and I teach and mentor my staff about the importance of advocacy work. Advocacy is one of the many reasons I stay involved as a patient on the PatientsLikeMe website. Additionally, I have been able to partner with other organizations such as Partnership to Improve Patient Care (PIPC) and the US News & World Report to share my story with diverse audiences. Ultimately, these experiences have allowed me to help other patients and caregivers see the value of advocacy in patient-centered health care, and I am so grateful to be a part of this powerful movement!”

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A bold choice to fight epilepsy

Posted May 6th, 2015 by

As originally seen on the Tampa General Hospital News Center website

It was scary enough for Letitia Browne-James’ parents to witness their child’s epileptic seizures. But they were also frightened when a doctor suggested brain surgery for their 12-year-old.

“My parents said ‘no way,’” Browne-James said. “It was a very scary thought.”

They tried medications, the first step for most of the more than three million U.S. epilepsy patients. But Letitia, like almost a third of patients with epilepsy, could not find a medication that worked. And so for more than 20 years, Letitia fought a losing battle against epileptic seizures that slowly eroded her quality of life.

Finally, at age 31 and desperate for a cure, Letitia took that final dramatic step: brain surgery. This is the story of her journey to become seizure-free.

For thousands of epilepsy patients, brain surgery can be the best option to end seizures. But for these patients with uncontrolled seizures, Browne-James’ experience is typical. Most who eventually have surgery wait 15 to 18 years after diagnosis.

Researchers estimate that well over 100,000 epilepsy patients are good candidates for surgery. But each year, only about 3,000 receive it.

“Surgery is the most dramatic thing you can do to treat epilepsy,” said Dr. Selim Benbadis, director of the Comprehensive Epilepsy Program at Tampa General and University of South Florida. “But these misconceptions exist. We see patients all the time who say, “Oh, my neurologist said, ‘Don’t do that. That’s a last resort before you die.’ “

For many patients, the risk of uncontrolled seizures is higher than surgery itself, Benbadis said. Two recent studies found most patients were seizure-free afterwards.

“If things aren’t working, there is a next step,” said Benbadis, also a professor of neurology at the USF Health Morsani College of Medicine. “Get to an epilepsy center, preferably Level IV, and see what’s causing your seizures and what your treatment options are.”

Patients who visit such a center may even discover they don’t have epilepsy.  Up to one-third of them are misdiagnosed.

***

Browne-James, who lives in Orlando, had her first seizure when she was six months old – and then not again until she was 10. She was diagnosed with epilepsy, an electrical disturbance in the brain that causes seizures. She tried one medication, then another.

But at least once a month, she would have a seizure.

She chafed against the limits that came with epilepsy. She wasn’t allowed to go swimming. Or play too far from home.

She feared having a seizure in school or in church, while she was acting or dancing on stage, or, as she got older, on a date. When she met her future husband, Jonah James, Jr., through mutual friends, she told him about the disease right away.

She worried about her wedding day.

“I prayed really hard, just asking God to allow me to let me make it through that day without having a seizure,” she said.

Her seizures gradually got worse, occurring at least once a week. Now a counselor, she worried about having a seizure in front of a client.

Browne-James wasn’t able to drive. She lost a tooth. She cut her knee so badly that it required stitches and left a sprawling scar. She lost count of the cuts and bruises and hospital visits, all caused by seizures she couldn’t remember.

She tried more medications, and grew increasingly frustrated. About three years ago, Browne-James joined a website that has an epilepsy forum and began to talk with other patients.

The website, called PatientsLikeMe, became her lifeline. It prompted her to find an Orlando neurologist who specializes in epilepsy, called an epileptologist. She learned about brain surgery. Her new doctor gave her the names of three hospitals in Florida where the surgery is performed.

When she called the first one, the doctor there said the hospital could perform her surgery. But he told her she would be better off with a center that performs the surgery more often. She said he recommended Dr. Fernando Vale, surgical director of Tampa General’s epilepsy program and vice chair of USF Health’s Department of Neurosurgery and Brain Repair. Tampa General is the busiest epilepsy surgery center in Florida.

***

Browne-James underwent an extensive evaluation to see whether surgery would help her.  Doctors like Benbadis can identify what part of the brain the seizures come from and evaluate whether it controls any essential cognitive functions.  They can also see which side of the brain is dominant.

“We need to educate patients and physicians more,” said Dr. Vale. “It’s still delicate surgery, don’t get me wrong, but people talk about surgery as scary, how it will disfigure them. And there are misconceptions among neurologists. We are trying to reduce these fears and reassure patients it’s a safe operation.”

The extensive neurological testing and use of two-inch long “keyhole” incisions can help reduce those fears, he said. As the day of the surgery grew closer, Browne-James wasn’t scared.

“Everyone thought I was crazy because I was very excited and counting down the days to brain surgery,” she said.

Dr. Vale removed a tiny piece of Browne-James’ brain, about the size of a sugar cube.  Browne-James marveled at how small the scar was.

She hasn’t had a seizure since. And her cognitive abilities are fine; she’s now working on  her PhD.

Since her surgery, Browne-James has become an outspoken patient advocate. She’s made a video for PatientsLikeMe and frequently speaks with patients and medical researchers about the need for patients to be informed about their care.

One of those patients was an 11-year-old girl.  The girl went on to have surgery and has been seizure-free since.

“She doesn’t have to grow up like I did,” Browne-James said. “Living with epilepsy and planning her life around it.”

For more information about the Comprehensive Epilepsy Program at Tampa General Hospital, contact vkelley@tgh.org or call (813) 844-4675.

Story by Lisa Greene, video and photos by Daniel Wallace, Tampa General News, Friday, April 17, 2015.

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PatientsLikeMe members to be highlighted in patient empowerment webinar

Posted January 13th, 2015 by

Many PatientsLikeMe members talk openly about the reasons why they donate their health data and why they believe patient-centered healthcare means better healthcare for all. And just a week from now, two of them will be sharing their stories with everyone in a live webinar.

On Tuesday, January 20th, at 2:00pm EST, the Partnership to Improve Patient Care (PIPC) is hosting their first “Patient Empowerment Webinar,” an online event focusing on the importance of patient engagement in their own healthcare and in health policy. Two PatientsLikeMe members, Ms. Laura Roix and Ms. Letitia Brown-James, will be participating in the discussion, and their experiences will be a part of the webinar. Here’s a little bit about Laura and Letitia, and more ways they’re already empowering others:

Laura is a member of the idiopathic pulmonary fibrosis (IPF) community on PatientsLikeMe, and she recently traveled to Maryland to speak at the Food and Drug Administration’s (FDA) Patient-Focused Drug Development Public Meeting on IPF.  Laura went with our very own Sally Okun RN, VP of Advocacy, Policy and Patient Safety and spoke about her journey and what it’s like to live with IPF. (She recapped her experiences in an October blog interview.) But that’s not all Laura shares – she’s a 3-star member on PatientsLikeMe, which means she is a super health data donor and always keeps her information up to date so others can learn from her.

Letitia has been living with epilepsy since she was little, but after connecting with the PatientsLikeMe epilepsy community she learned about new treatment options available to her, like surgery. She shared about her experiences in a video, and after receiving her surgery, she’s been living seizure-free for years. Letitia is also a part of the first-ever PatientsLikeMe Team of Advisors, a patient-only panel that gives feedback on research initiatives and creates new standards to help all researchers understand how to better engage patients.

The PIPC webinar is open to everyone, so if you’d like to join, please RSVP to the event coordinator via email. Hope to see you there!

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What’s your epilepsy story?

Posted November 3rd, 2014 by

That’s what everyone’s asking this November during National Epilepsy Awareness Month.  If you’ve been diagnosed, or know someone living with epilepsy, put on your brightest purple clothes and start raising awareness for this neurological condition.

What are three things you need to know about epilepsy? 1

  • It’s a condition that affects the nervous system and causes seizures
  • A seizure is a disruption of the electrical signals between brain cells (neurons)
  • People are diagnosed with epilepsy after they experience two or more unexplained seizures separated by at least 24 hours

Epilepsy affects about 50 million people around the world, including over 2 million in the United States alone.2 3 Although there is no cure for epilepsy, seizures can be managed and suppressed through medications, non-medication treatments such as vagus nerve stimulation, or surgery.4 5 6

To help raise awareness this month, the Epilepsy Foundation of America (EFA) has organized a series of short online videos that feature people from all over the U.S. sharing their experiences with epilepsy. Watch one of them below and check out the rest on the EFA’s “Story Days” campaign page.

 

Los Angeles

Don’t forget to check out Letitia’s video, too – she’s a PatientsLikeMe member who has been living seizure-free after she learned about an epileptologist through her community. And if you’ve been diagnosed, reach out to the more than 9,000 PatientsLikeMe members living with epilepsy.

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1 http://www.epilepsy.com/learn/about-epilepsy-basics

2 http://www.who.int/mediacentre/factsheets/fs999/en/

3 http://www.cdc.gov/epilepsy/basics/fast_facts.htm

4 http://www.uptodate.com/contents/overview-of-the-management-of-epilepsy-in-adults?source=search_result&search=epilepsy&selectedTitle=3~150

5 http://www.uptodate.com/contents/evaluation-and-management-of-drug-resistant-epilepsy?source=see_link

6 http://emedicine.medscape.com/article/1184846-treatment#aw2aab6b6b2


Raising awareness for epilepsy in many different ways

Posted November 7th, 2013 by

November is often seen as a month of transition – autumn gives way to winter, the holiday season fires up, and our short sleeves disappear for warm coats and sweaters. And as many of you know, November is also National Epilepsy Awareness Month. Many different organizations focus on epilepsy throughout the year, but this November, we’re all transitioning into high gear to raise even more awareness about epilepsy.

The straight facts:

  • Epilepsy currently affects 2.2 million people in the United States (and more than 60 million people worldwide)
  • The condition is the fourth most common neurological condition in the United States
  • More than 570,000 adults age 65 or older are living with epilepsy, along with 300,000 children under the age of 15 in the United States1

Thanksgiving isn’t the only important day in November

nowiknow

This whole month is dedicated to sharing experiences and learning about epilepsy, but on November 7th, the Epilepsy Foundation is teaming up with Disneyland to host the first annual “Epilepsy Awareness Day at Disneyland Resort” in southern California. Children and parents living with epilepsy will get a chance to enjoy a fun-filled, stress-free day at Disneyland, and a portion of all tickets sold will be donated to helping everyone who has epilepsy.

Over 30 organizations are teaming up to help make Epilepsy Awareness Day a reality, and the sold-out event promises to stomp out epilepsy stigmas while children have a ton of fun.

Today, the events at Disneyland are a part of a global effort to improve the lives of epilepsy patients, together, all through swapping stories and sharing knowledge.

Getting to know the Epilepsy Foundation

eflogo

The Epilepsy Foundation (EF) was established in 1967, and for over 45 years, the organization has been striving for change and working hard to assist the more than 2 million Americans living with epilepsy.

Besides the partnership on National Epilepsy Day with Disneyland, some of the EF’s innovative programs include the Jeanne A. Carpenter Epilepsy Legal Defense Fund and the H.O.P.E. (Helping Other People with Epilepsy) Mentoring Program.

Check out their website to learn more about epilepsy and what you can do to help raise awareness during National Epilepsy Awareness month.

Thanks for sharing

The members of the epilepsy community on PatientsLikeMe aren’t just raising awareness in November, they’re doing it all year long by participating in real-time research.

epilepsycommunitystats

Recently, they took part in a rescue medication study that  PatientsLikeMe and Acorda® Therapeutics partnered up on.  And on behalf of the awesome epilepsy community helping to reach our survey goal, PatientsLikeMe made a donation of $2,500 to the Epilepsy Foundation. So what did everyone say about rescue meds and epilepsy?

  • Nearly half of respondents (41%) said that in the past year, they have had multiple seizures within 24 hours despite taking daily anti-seizure medication
  • Almost half (45%) reported that they would not have access to medication that would stop a seizure
  • Three out of four respondents said they have never discussed rescue medications with their doctors
  • Check out all the results here

Phew! There really is a lot going on for Epilepsy Awareness Month. Not sure where to start? You can…

There are more than 8,000 members of our epilepsy community – all are raising awareness by sharing their real-world experiences through research, surveys and the community forums. The topic could be anything from seizures to epilepsy treatment newsadd your voice and join the conversation today.

Letitia’s story and the patient voice

Say hi to Letitia. She’s been living with epilepsy since she was 10 years old, and she’s been a PatientsLikeMe member for over three years. As we all share our stories to help raise awareness, check out what she has to say in this video about how the members at PatientsLikeMe changed her life.

“I feel like PatientsLikeMe changed my life because it gave me a lot of the answers that I’ve been searching for all of these years…without PatientsLikeMe I probably would have never found out about an epileptologist.”


1http://www.epilepsyfoundation.org/aboutepilepsy/