127 posts in the category “Epilepsy”

Meet Ginny from the PatientsLikeMe Team of Advisors

Posted January 26th, 2017 by

Say hello to Ginny (Mrslinkgetter), a case manager and family partner with Youth Mobile Crisis Intervention living with depression and epilepsy.  She’s also a member of the 2016-2017 Team of Advisors.

Check out what Ginny had to say about living with depression and epilepsy, the loss of her son, and how being her own advocate and the support of others helps her deal with stigma:

What gives you the greatest joy and puts a smile on your face?

My first greatest joy that puts a smile on my face is spending time with my granddaughter! (She is 2 and the cutest girl on the planet by my biased opinion!). My second greatest joy is connecting with people using either my journey with chronic health issues, or my son’s and being able to help them. I often edit my son’s story a bit if I believe the way his life ended might cause more harm to them, especially my clients.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

People have pre-conceived ideas about depression, anxiety, and seizures and even when I try to inform them, they often bounce back to their former thinking. This causes, not just an obstacle, but sometimes a mountain between us. I have had people tell me they are “afraid of me” because of my seizures. They had been told my seizures are focal, not convulsive. I do not fall on the ground and shake, yet, they are afraid, WHY? Ignorance. I have had relatives who have shunned me due to the diagnosis, later in my life. I lost friends over the diagnosis of depression. I believe in speaking out about the conditions because I do believe we need to be the changers of the world. I know that it is an enormous task. One of my son’s epilepsy doctors was also one who had some big prejudice about the disorder. I went to him after my son’s death. He had told me that I had caused my son’s stigma. I had asked him for many years “How? How was it that I had caused kids to punch my son in the head and ask him to spaz out?” The doctor never answered me.

When we talked after Sam died I showed him the picture of Sam and Tony Coelho on a magazine cover. I asked him if he knew who that was. He did, and smiled. I told him that Tony had told Sam each year when we saw him, “Never be ashamed to talk about your epilepsy.” I told this doctor that Sam did become ashamed because the doctor told him to be ashamed. I told the doctor I believe it is up to us to change the world about how they view those of us who have epilepsy. I treated Sam no differently as I treated my father who had diabetes as I grew up. He had a medical condition over which he had no control. This specialist then nodded his head agreeing with me.

I speak to people to let them know these conditions are medical. They need treatment like a heart condition, asthma, diabetes. It is time they are not suppressed, made to be ignored, or thought shameful.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

My depression can ease up on me like someone adding weight until I cannot carry it any longer by myself. Suddenly I realize I am crying more easily for little reason. I cannot do simple tasks that used to come easily. I thought I was doing well, but have slid back into depression. This is not the same as “sadness.” I want to stay in bed, but no amount of extra sleep is enough. Concentration can become more difficult. I can be grouchier.

When my I miss my seizure medications or have long migraines, I have focal seizures. I can sense a prodrome (aura) when a seizure is coming on. My brain is just not working right during that time. My words are not able to form right or come out correctly. This can happen with both my seizures and when I have a bad migraine coming on so I try to get home to be safe. I have a long warning time, typically. During the seizure my head can feel too heavy for my neck. I am not able to talk but I can sometimes hear what is going on around me. I can have tingling in my face and hands. I will usually sleep after. Even after I wake up I am groggy and my brain is not working at full capacity. Sometimes my vision will “white out” and l have been known to send e-mail during that time that make no sense. Apparently I kept typing even though I was in a seizure. Fortunately it was to a family member who I could explain what happened!

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Become informed in your condition as much as you are comfortable with from reputable sources. Find a good support network whether it is family, a support group, faith group or whatever you can form. You will do better with support around you.

How important has it been to you to find other people with your condition who understand what you’re going through?

It has been vital to me to find people who understood what I was going through! When my son was first diagnosed, I was not on the internet so it took a while for us to connect with others. When I did it felt like a miracle! Once I connected I have wanted to stay connected. When I was diagnosed a few years later I needed to speak to people about my own connection. These have been my friends for so many years!

Recount a time when you’ve had to advocate for yourself. 

I have found a medication that would be better for me as I went into menopause. I had been at the American Epilepsy Society Meetings and learned about this new medication. I called my epilepsy doctor when I returned. She was pleased to hear about the medication and was more than willing to try this for me. It gave me a return to better seizure control. My doctor is very open to what information I have for her. I have had to fight insurance companies many times for my care and for my son’s care.

What made you want to join the PatientsLikeMe Team of Advisors?

I want to be able to impact others who have chronic health conditions in a positive way. I know that the online community was what got me through years with Sam. Sharing my experiences and passing it along to others my assist them in their journey.

 

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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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PatientsLikeMe Welcomes Next Patient Team of Advisors

Posted November 14th, 2016 by

 

CAMBRIDGE, Mass, November 14, 2016PatientsLikeMe has named 11 members to its patients-only 20162017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners.

“Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.”

More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington.

John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and collaborate with PatientsLikeMe and other members of the Team of Advisors. “My experience with PatientsLikeMe has been filled with exploration, information and conversation. My health journey has been positively impacted through my connection with other members, by the various tools for tracking and logging health data, and by opportunities just like this – to participate in an advisory capacity.”

The 2016-2017 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times during the upcoming year. This is the third Team of Advisors the company has formed. The 2015 team focused on redefining patient partnerships and established new ways for the healthcare industry to connect with patients to deliver better care. In 2014, the inaugural group provided feedback to the research team and discussed ways that researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Katherine Bragg
PatientsLikeMe
kbragg@patientslikeme.com
617.548.1375


“I am working on all of it slowly” — Member David opens up about his experience with PTS

Posted April 13th, 2016 by

Meet member David (david61060), a United States Air Force veteran who’s living with multiple conditions including PTS, sleep apnea, and epilepsy. When we caught up with him, David shared what it was like to grow up as a “navy brat,” his experience in the military, and how It took him more than nine years to admit to himself that he had PTS.

Below, see what he has to say about triggers, coping with more than one condition, and the value of connecting with others on PatientsLikeMe.

Tell us a little about yourself.

To tell you about myself … well I was a navy brat and grew up mostly around just military kids and people connected with the military, every 3 to 4 years moving to a new base. Except in the 70s we stayed in the Republic of Panama for 6 years, leaving there in 1976. I was 16 — that was the hardest move. First year of high school … leaving behind a lot of friends that I knew I would never see again. Moving to California and graduating high school, I went into the Air Force. In my 15 years I saw a lot and did a lot but my last tour was the worst: Desert Shield and Desert Storm.

I came home with so many problems – depression, seizures, nightmares, waking up in a different room than where I went to sleep … then the divorce and losing the house. The car we had broke down and I had to walk or take the bus to the base (fortunately we did not live far from the base).

Most of the military doctors at Kelly Air Force Base did not seem very sympathetic to my problems including weight gain because of the drugs … blackouts at work THEN the notification that I was being discharged because of my weight gain. The next thing I knew I was in a true padded cell with the bed bolted to the floor.

If not for my older brother (a fighter pilot in the USAF) and my father (a retired USN Officer) stepping in and having multiple conferences, I would have been discharged with out a hope of help from the VA or the US government.

You wrote in a forum post, “Some people … did not want to even hear or listen to me.” How did you find the courage to open up about your PTS?

Opening up about my disorders — PTS and my seizures — I was originally very quiet about my problems. I do not even know if my parents who I lived with even knew. An assistant at the VA in Martinez, CA recommended that I go to a meeting at the mental health unit, and I did. I met one of the best doctors I have known, Dr. Kotun.  She recommended that I go into one-on-one therapy, so I did.

It took me more than nine years to admit to not only myself but to my therapist that I was suffering from PTS.

In your profile, you list epilepsy, depression, and sleep apnea as some of the other conditions you live with. How has it been managing these in addition to PTS?

Managing and just attempting to live with them are not really that different. Being sure that I take my pills three times a day is a real trial for me. In the morning there are 12 pills (including vitamins and other OTC pills). Getting my sleep is and can be the hardest part. Sometimes the nightmares and the sweats can be the hardest part of the day. Putting the mask on for the sleep apnea at times seems like putting on that gas mask … just dozing off and I hear a car horn that sounds like the warning siren. The mask suddenly feels constricting … I end up awake for hours afraid to have to put it back on. Usually I do not until the next night.

As I said before I think living with all I have can be really trying for me and my new wife but I have to go on — I have to — the other choice is not an option.

Some people have shared their PTS “triggers.” Do you know your triggers, or do symptoms happen unexpectedly?

My triggers for my PTS seem to happen when anything military is close— the helicopters flying overhead. Hearing munitions going off, and sometimes it could just be a memory that that was triggered — walking in a park and we come to a fence line and the area suddenly looks like the area close to one of the bases I was at, then a car backfires and I drop to the ground and reach for my weapon. In the long run it can be embarrassing to react like that in public. This had stopped me from even going out the park or into the city but I am working on all of it slowly.

And then there are times that I just have that feeling for no reason and the fear comes over me again like a wave. It makes no sense.

What has it been like connecting with other vets on PatientsLikeMe?

Connecting with others and talking to others about my problems and seeing theirs has been a remarkable window to work with … to realize that if we all open up we could help each other. Being that there are others on the site that are not veterans but have a lot of the same problems has been very helpful to me, and I hope to others that I have written to as well.

 

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Your data doing good: The POEM Study

Posted December 4th, 2015 by

When you share your health data, we all learn

Every minute of every day, people are sharing their health data on PatientsLikeMe. Some of you are focused on tracking how you’re doing over time. Many want to make sure the next person diagnosed can learn from your experience. All are contributing to the greater good, because what you share helps researchers see what patients really need.

During #24DaysofGiving this December, we’ll highlight some of the most important things we’ve learned from data that members like you have selflessly shared, and all the good your data donations are doing. Here’s a great example: the POEM Study, which showed that the secret ingredient to managing your health may just be patients like you.

PatientsLikeMe was founded on a simple idea: when patients connect with each other and share their experiences, they can learn how to better manage and treat their disease and improve their outcomes. Over the years, members proved this is possible time and again. But would a rigorously-conducted scientific study confirm what we already thought to be true?

Our partner UCB wanted to work with us to find out. They helped to build and grow the epilepsy community on PatientsLikeMe back in 2010.  At the time, they were thinking about patient services that you might not expect a pharmaceutical company to focus on, things like information, advocacy, and education. In 2011, we worked together on a pilot study with people living with epilepsy. We learned that people who joined PatientsLikeMe felt that they better understood their own seizures. They even reported improved adherence to their medications. The results also underscored a significant piece of understanding about this particular population; prior to joining the site, one out of three epilepsy patients had never met another person living with this condition.

As the community grew, so did our understanding of what matters to these patients. Then in 2013, we found another partner who wanted to help create a new study focused on an even more specific group: veterans living with epilepsy, an often isolated and stigmatized part of the community. The question we were trying to answer was this: could a network like PatientsLikeMe, with its epilepsy-specific tools and resources, help those who found out about the site from their doctors improve their ability and confidence to manage their condition?

Along with UCB we collaborated with the VA Epilepsy Centers of Excellence in a six-week study of veterans using PatientsLikeMe. The evidence showed that by sharing their health data and connecting with each other online, these patients’ outcomes improved. The nearly 100 veterans who took part in the study grew more confident that they could take care of themselves, and did a better job of managing their care. The results were published this year in Neurology, a leading scientific journal in the field.

It all started with one partner, one community and a whole lot of data sharing. And now, five years later, there are nearly 10,000 epilepsy patients using PatientsLikeMe and helping one another to live better every day. You are the secret ingredient to helping others better manage their health. Thank goodness it’s not a secret anymore.

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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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Recapping with our Team of Advisors!

Posted June 19th, 2015 by

Many of you will remember meeting our inaugural Team of Advisors from when we first shared about this exciting team last year! This group of 14 were selected from over 500 applicants in the community and have been incredible in their dedication and desire to bring the patient voice directly to PatientsLikeMe. As the team is wrapping up their year-long term as advisors, we wanted to make sure we update the community on all the hard work they’ve done on your behalf!

First Ever In-Person Patient Summit in Cambridge
Your team of patient advisors travelled from all over the country to join us for 2 days here in Cambridge. They met with PatientsLikeMe staff, got a tour of the offices and began their collaboration together as a team!

Blog Series
The advisors have also been connecting with the broader community as part of an ongoing series here on the blog! This is an impressive group and we hope you’ll read through to learn more about the team.  Some of the interviews featured so far include profiles on BeckyLisaDanaEmilieKarla, Deb, AmySteve, Charles, Letitia and Kitty. If you haven’t had the chance to read their stories and what they’re passionate about yet, feel free to check these out!

Best Practices Guide for Researchers
As part of their mission, this group discussed how to make research more patient-centric and ways that researchers can learn to better engage with patients as partners. Out of this work, the team developed and published the ‘Best Practices Guide for Researchers’, a comprehensive written guide outlining steps for how researchers can meaningfully engage patients throughout the research process. You can hear more about the whole process in this exciting video from some members of the team as they discuss their experiences with the creation of this guide:

Community Champions
The advisors have been wonderful community champions throughout the year, providing invaluable feedback about what it’s like to be a person living with chronic conditions and managing their health. This team has weighed in on new research initiatives, served as patient liaisons and been vocal representatives for you and your communities here on PatientsLikeMe. Whether it was sitting down with a research team to give their thoughts on new projects, discussing their experiences with clinical trials, giving feedback about medical record keeping or opening up about patient empowerment – this group has been tireless in representing the patient voice and PatientsLikeMe community!

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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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Taking control: from PatientsLikeMe member Letitia and our friends at the Partnership to Improve Patient Care

Posted April 1st, 2015 by

Many of you have already met Letitia. She’s part of the PatientsLikeMe epilepsy community, and from her Patient Voice video to Twitter (@Pulchritude81), she continues to be a rockstar when it comes to sharing her experiences and advocating for patient centered research. Her latest efforts focused on patient empowerment where she headlined a webinar with our friends at the Partnership to Improve Patient Care (PIPC). She followed that up with a post on PIPC’s blog and we wanted share what she had to say. Check it out below.

“My name is Letitia Browne-James, and I have had epilepsy all my life. Until I started to empower myself about my own care I was unsure that I would ever be cured. After my illness continued to get worse and the seizures more violent while I was trying to live life, I decided to look online for possible solutions because my experience with previous doctors continued to be frustrating and led to dead ends.. Finally, after a few months of research , I was equipped to ask the right questions, to demand better treatment, and even undergo a surgery that I originally didn’t even know existed.

At the age of 10, I was formally diagnosed with epilepsy, and I spent my life, through school and at work, suffering from seizures that continued to get worse. Years went by with multiple doctors and consults both nationally and internationally, leaving me frustrated and confused because the seizures were no longer appearing on scans and they continued to get more violent and frequent.

Eventually, I began doing my own research about my medical care and joined an online resource for patients called PatientsLikeMe. I learned that there were other options available, such as a 72 hour EEG that could detect what type of seizures I was having. My involvement with PatientsLikeMe eventually led me to find out about an epileptologist – a doctor specializing in epileptic care. My epileptologist performed tests that led him to accurately diagnose the type of seizures I was having. From there, I learned that I was a candidate for epilepsysurgery that I hadn’t heard about since I was about 10-years-old. . Prior to surgery, I asked many questions and went through a series of tests to make sure that surgery was the right procedure for me. And since my surgery in August 2012, I have been seizure free and I feel better than ever.

My experience with the medical care system and my efforts to be an empowered patient taught me a few things. Empowerment includes continuous collaboration and effort, not only from a medical team, but from us, the patients. If you are not happy with the care you are receiving or you feel like something is not right at any point in the process, it is important to empower yourself to research your treatment options, talk to other patients with the same condition to get ideas of what has worked for them as well as social spport, and speak out when you questions about the care being provided to you. The truth is, each patient is different, and every medical team should work for the individual person – not for the diagnosis. Solutions that work for one subset of patients do not necessarily work for all patients; the best treatment for the average patient is not necessarily the best for you.

Throughout my journey to find a solution for epilepsy, I developed my own passion – helping patients know that they do have a voice when it comes to medical decisions. I serve as a patient research advisor with 13 other patients for PatientsLikeMe. This expereince has allowed me to continue my passion in an environment that prioritizes patient-centeredness and patient empowerment. And the results speak for themselves. When patients are engaged in the decision-making process regarding their care, they experience better health outcomes and lower costs, while also developing trust in their providers.

Shared decision-making in the medical process cannot be ignored as the healthcare industry is making decisions on what treatments we should be able to access. Patients have to understand their options and make an active choice in their care to get the most out of their treatment. Patient preferences should matter to our healthcare team. And if it doesn’t, we should be empowered to find a different health care provider. As I’ve often said when speaking about patient empowerment: your doctor may be the expert in medicine, but only you are the expert on you.”

Visit the PIPC’s website to learn more about patient-centeredness and comparitive effectiveness research.


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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2014 recap – a year of sharing in the PatientsLikeMe community

Posted December 23rd, 2014 by

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys in short videos and even posted about their favorite food recipes.

A heartfelt thanks to everyone who shared their experiences this year – the PatientsLikeMe community is continuing to change healthcare for good, and together, we can help each other live better as we move into 2015.

Team of Advisors
In September, we announced the first-ever PatientsLikeMe Team of Advisors, a group of 14 members that will work with us this year on research-related initiatives. They’ve been giving regular feedback about how PatientsLikeMe research can be even more helpful, including creating a “guide” that highlights new standards for researchers to better engage with patients. We introduced everyone to three so far, and look forward to highlighting the rest of team in 2015.

  • Meet Becky – Becky is a former family nurse practitioner, and she’s a medically retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer.
  • Meet Lisa – Lisa was diagnosed with Parkinson’s disease (PD) in 2008, and just recently stopped working as a full-time executive due to non-motor PD symptoms like loss of function, mental fatigue and daytime insomnolence. Her daughter was just married in June.
  • Meet Dana – Dana is a poet and screenplay writer living in New Jersey and a very active member of the mental health and behavior forum. She’s living with bipolar II, and she’s very passionate about fighting the stigma of mental illness.

The Patient Voice
Five members shared about their health journeys in short video vignettes.

  • Garth – After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.
  • Letitia – has been experiencing seizures since she was ten years old, and she turned to others living with epilepsy on PatientsLikeMe.
  • Bryan – Bryan passed away earlier in 2014, but his memory lives on through the data he shared about idiopathic pulmonary fibrosis. He was also an inaugural member of the Team of Advisors.
  • Becca – Becca shared her experiences with fibromyalgia and how she appreciates her support on PatientsLikeMe.
  • Ed – Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort.

Patient interviews
More than 30 members living with 9 different conditions shared their stories in blog interviews.

Members living with PTSD:

  • David Jurado spoke in a Veteran’s podcast about returning home and life after serving
  • Lucas shared about recurring nightmares, insomnia and quitting alcohol
  • Jess talked about living with TBI and her invisible symptoms
  • Jennifer shared about coping with triggers and leaning on her PatientsLikeMe community

Member living with Bipolar:

  • Eleanor wrote a three-part series about her life with Bipolar II – part 1, part 2, part 3

Members living with MS:

  • Fred takes you on a visual journey through his daily life with MS
  • Anna shared about the benefits of a motorized scooter, and a personal poem
  • Ajcoia, Special1, and CKBeagle shared how they raise awareness through PatientsLikeMeInMotion™
  • Nola and Gary spoke in a Podcast on how a PatientsLikeMe connection led to a new bathroom
  • Tam takes you into a day with the private, invisible pain of MS
  • Debbie shared what it’s like to be a mom and blogger living with MS
  • Shep spoke about keeping his sense of humor through his journey with MS
  • Kim shared about her fundraising efforts through PatientsLikeMeInMotion™
  • Jazz1982 shared how she eliminates the stigma surrounding MS
  • Starla talked about MS awareness and the simple pleasure of riding a motorcycle

Members living with Idiopathic pulmonary fibrosis:

Members living with Parkinson’s disease:

  • Dropsies shared about her frustrating Parkinson’s diagnosis experience and how diabetes might impact her future eating habits

Members living with ALS:

  • Steve shared the story behind his film, “My Motor Neuron Disease Made Easier”
  • Steven shared how technology allows him to participate in many events
  • Steve shared about creating the Steve Saling ALS residence and dealing with paramedics
  • Steve told why he participated in the Ice Bucket Challenge
  • Dee revealed her tough decision to insert a feeding tube
  • John shared about his cross-country road trip with his dog, Molly

Members living with lung cancer:

  • Vickie shared about her reaction to getting diagnosed, the anxiety-filled months leading up to surgery and what recovery was like post-operation
  • Phil shared the reaction she had after her blunt diagnosis, her treatment options and her son’s new tattoo

Members living with multiple myeloma:

  • AbeSapien shared about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding

Caregiver for a son living with AKU:

  • Alycia and Nate shared Alycia’s role and philosophy as caregiver to young Nate, who is living with AKU

Food for Thought
Many members shared their recipes and diet-related advice on the forums in 2014.

  • April – first edition, and what you’re making for dinner
  • May – nutrition questions and the primal blueprint
  • June – getting sleepy after steak and managing diet
  • July – chocolate edition
  • August – losing weight and subbing carbs
  • September – fall weather and autumn recipes
  • Dropsies – shared her special diabetes recipes for Diabetes Awareness Month

Patients as Partners
More than 6,000 members answered questions about their health and gave feedback on the PatientsLikeMe Open Research Exchange (ORE) platform. ORE gives patients the chance to not only check an answer box, but also share their opinion about each question in a researcher’s health measure. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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Getting to know our 2014 Team of Advisors – Becky

Posted November 10th, 2014 by

So far, we’ve introduced you to two members of the PatientsLikeMe Team of Advisors – Dana (bipolar II) and Lisa (Parkinson’s). Today, say hello to Becky, a retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer.

About Becky (aka Rebelor)
Becky is a former family nurse practitioner, medically retired from military service. Used to a life in service, Becky is always prepared to get up and go, so when we called upon her to participate in the Team of Advisors, she was ready! When describing her journey with epilepsy, Becky said her initial complex partial seizures felt like divine intervention—she was waiting for the big answer or revelation, but the seizure would end just before discovery. Unfortunately, her journey with epilepsy collided with a journey with breast cancer, but she’s three years out of treatment and doing great. Becky uses her GI Bill to study philosophy, religious studies and creative writing.

Becky’s view on patient centeredness
Becky believes patient centeredness is the “holistic consideration of a person beyond gender and race. The cultural, spiritual, situational picture of the test subject.”

Becky on being part of the Team of Advisors
“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’s military background
“I’m a retired Flight Nurse and started my military career in 1976 as an Intelligence analyst in the U.S. Army. I was initially assigned to Fort Bragg in the 7th Special Forces Group and went to jump school at Fort Benning in September of 1976. I made a total of 16 training jumps between school and my 3-year enlistment. I left the Army and started a family, but returned to the Air Force Reserve in Tampa as a Flight Nurse. I deployed in support of Hurricane Hugo, Desert Shield and Desert Storm, where I worked in the Aeromedical Evacuation Control Center in Riyadh, and then in this faraway location in a Mobile Aeromedical Staging Facility.

In 2003 I was activated and deployed to Europe as the Director of Operations for all aeromedical evacuation from OIF and OEF. It was an enormous job that took me from England to Germany, Spain, Italy and Kuwait. I flew 300 missions on the C-141 and C-17, moving 10,000 patients from forward areas to the U.S. After my return to the U.S., I had to return to my civilian job as a Family Nurse Practitioner. It was very difficult to manage the deployments and military career with my civilian career. My last 5 years in the military I worked at USSOCOM as a Family Nurse Practitioner and the chief of the clinic. 25 years of service. I was medically retired from the Air Force after I started having seizures in 2008. I am an alumnus of the Wounded Warrior Project, and my husband is the President and CEO of America’s Warriors Partnership.

As a female veteran, I am very much concerned about how we handle multiple roles, including transitioning to the civilian world and managing health and relationship issues. I am now using my GI Bill to return to college. Because of my epilepsy and breast cancer that followed, I have noticed a significant decline in my memory and cognition. I am using this opportunity to return to the academic world as a neurocognitive therapist. I’m not sure it is working, but it is challenging me.”

Becky’s passion for Veteran’s issues
“My passion with veteran’s issues is to connect with anyone who has served honorably and is in need of some support. Sometimes, we just need a little drill sergeant telling us to stand tall and carry on. Most of the veterans I know are silent warriors who have successfully returned to their communities and grown into new lives, taking with them the lessons of military service and training. There are some who have been injured in some way or are ill that need extra support, and that is where the Augusta Warrior Project or many other veteran support organizations can be very helpful.

The VA is not equipped to mentor and coach veterans through the turbulent times of life in the same way that many organizations can, but my belief in holistic healthcare is totally ingrained and I know it works. There has to be continuity and someone who understands the system and you. That is why I believe in the advocacy and support offered by some community based veterans programs like the Augusta Warrior Project, the Care Coalition at USSOCOM, the Wounded Warrior Project. They have to be comprehensive in their approach to advocate for a veteran, educate and assist them through school, ensure they have access to health resources and help them become successfully employed. All of this takes an all-knowing mentor over time! The benefits are there, they just aren’t user friendly!”

More about the 2014 Team of Advisors
They’re a group of 14 PatientsLikeMe members who will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.

So where did we find our 2014 Team? We posted an open call for applications in the forums, and were blown away by the response! The Team includes veterans, nurses, social workers, academics and advocates; all living with different conditions.

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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