“Today [my son] Jake is living a wonderful life, an extraordinary life, and now I know that’s possible. When Jake was first diagnosed, we didn’t know that. Now I know that…and that we’re not alone.”
- Actor Greg Grunberg, father of a 16-year-old with epilepsy
When it comes to epilepsy, what do you know now that you wish you knew sooner?
That’s the question the Epilepsy Foundation is asking epilepsy patients and their families to ponder during National Epilepsy Awareness Month, which takes place every November. Share your struggles and successes in a video submission to the “Now I Know” campaign. Visitors to Epilepsy Foundation’s Facebook page will then have to the opportunity to vote on their favorites and share top videos with their social networks. Ultimately, the top vote getters in each of four regions will win iPads and other prizes.
Affecting more than two million Americans, epilepsy is defined by the Epilepsy Foundation as “a medical condition that produces seizures affecting a variety of mental and physical functions.” When a person has two or more unprovoked seizures – brief, strong surges of electrical activity affecting part or all of the brain that last anywhere from a few seconds to a few minutes – they are typically considered to have epilepsy. Symptoms can range from convulsions and loss of consciousness to more subtle signs, such as lip smacking, blank stares and jerking movements in the arms and legs.
More than 7,000 PatientsLikeMe members are sharing their experiences with epilepsy, including their symptoms, treatments and more. Using our Seizure Meter, members are also able to record their seizure history, including the type of seizure (e.g. clonic seizure, complex partial seizure, tonic-clonic seizure). What are our members taking to control their epilepsy – and how well is it working? Check out the hundreds of treatment evaluations submitted for common medications such as Keppra, Lamictal and Topamax and learn from others like you today.
What does it mean to be “seizure smart”? It means being knowledgeable about how to help in the event that someone has a seizure in your presence. Given that one in 100 Americans has epilepsy – and one in 10 adults will have a seizure sometime during their life – this type of basic seizure first aid could help save someone’s life at work, at a restaurant or just walking down the street.
In honor of Epilepsy Awareness Month, the National Epilepsy Foundation has created a short interactive quiz that helps you become “seizure smart.” The goal is to get five million Americans to take and distribute the quiz. Once you’ve gotten “seizure smart,” you can then help raise awareness and proudly post your completion certificate on Facebook for everyone to see.
Got an affinity for posting things on Facebook anyway? You’re the perfect candidate for the Get Seizure Smart Photo Contest. Categories include “Funniest or Silliest,” “Most Impactful,” “Best Animal” and more. All photos must be submitted by November 30th at 3 p.m. EST. Learn about other Epilepsy Awareness Month activities taking place each day of the month here.
At PatientsLikeMe, we have 4,456 patients who report having epilepsy, with 71% of them female and 29% of them male. Some of the most commonly reported symptoms include excessive daytime sleepiness, headaches and memory problems, while some of the most commonly reported treatments include Levetiracetam (Keppra), Lamotrigine (Lamictal) and Topiramate (Topamax). (Click the links for each of these anticonvulsant medications to read hundreds of treatment evaluations submitted by our patients, who share their experiences with dosages, side effects, efficacy, costs and more.)
If you have epilepsy, join our growing community to share treatment data, support and advice with those who can relate. For everyone else, get “seizure smart” and help make a difference today – and quite possibly in the future.
Posted by Lori Piscatelli Scanlon | April 12, 2011
In today’s news…
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BRUSSELS, BELGIUM and CAMBRIDGE, MA–(Marketwire – April 12, 2011) – In a survey amongst people with epilepsy in the U.S. who have joined PatientsLikeMe®, the leading health data-sharing website for patients, respondents indicate that better seizure understanding and improved adherence are key benefits of using the site. The majority of respondents (55%) indicate a better understanding of their seizures, while one in four (27%) report improved adherence to treatment as a result of joining the PatientsLikeMe epilepsy community. When asked about their social interactions with other patients, one in three respondents (30%) said they did not know a single other person with epilepsy before joining the site; 63% of these said they were now communicating with one or more patients on the site.
The complete results from this survey of 221 epilepsy patients are being presented this week at the annual meeting of the American Academy of Neurology, in Hawaii, U.S. (April 9th-16th). In early 2010, PatientsLikeMe and UCB first invited U.S. epilepsy patients to share their seizure experiences, symptoms and treatments through the website; there are more than 3,600 members to date. UCB receives annonymized, aggregated data from the PatientsLikeMe epilepsy community…. >> Click here to see the full news release.
Today, we continue the series by highlighting examples of the choices patients like you have made in the past twelve months (pulled from 2010 newsletter interviews).
Patient Choices About…
Being Open
“I decided to make my profile public with the hope that something I have experienced, have done, or could say may help someone else along the way. Because my family seems to still live with the stigma of HIV/AIDS and prefer I don’t allow others close to our family to know of my status, I guess maybe in a way it is my subconscious defiance to my family’s fears.” – memyselfandHIV
Staying Active
“I imagine that by running the races I do, and talking to people about the benefits of a healthy and active lifestyle, that I might motivate a few people to become more active themselves. I mostly want people who like me have MS, but are still capable of being active, to know that it might help their symptoms and make them more comfortable.” – Ramilla
Making Lifestyle Changes
“I can’t drive under no means because where I live you need to be seizure-free for five years and I never am. So that’s a challenge having to depend on people or public transportation. Plus, where I work my co-workers aren’t as understanding as people were when I was a child.” – Blueeyedgoddezz
Tackling Challenges
“My biggest challenge of late has been to deal with my newly diagnosed diabetes. I am fortunate, because it was discovered in the early stages, so I’m doing quite well controlling my glucose levels. I’m learning to accept that there will be some high readings, rather than stressing over them, since my doctor is very pleased with my progress.” – Dirty Butter
Retiring
An interview with AlwaysLearning on her choice to retire from teaching.
The medical term for a heightened or increased sense of smell is hyperosmia. Also known as olfactory hyperesthesia and hyperesthesia olfactoria, the word “hyperosmia” is a combination of the Greek work “hyper,” meaning “above,” and the Greek word “osme,” meaning “sense of smell.” Put together, hyperosmia is an abnormally increased sensitivity to smells and odors.
At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with conditions, symptoms, treatments and more, approximately 100 patients report having a heightened sense of smell. The majority rate their hyperosmia as either “moderate” (42%) or “severe” (28%). Interestingly, their primary conditions range from ALS (Lou Gehrig’s disease) to multiple sclerosis (MS) to migraines, showing that this disconcerting symptom can occur for many different types of patients – and not just pregnant women.
Searching for this phenomenon in our forum discussions, several interesting things are revealed. For example, some patients report that strong smells have triggered their migraines or seizures, while others say their increased or heightened sense of smell is so acute that it’s like “tasting” the odors. Several patients report experiencing “phantom odors” that no one else is able to detect, and at least one says she started smoking cigarettes to help mask the intensity of smells around her.
JOIN PATIENTSLIKEME TODAY
Can you relate to any of these first-hand reports? These are the kind of insights you can only glean from other patients who are also experiencing a heightened sense of smell. So if you have hyperosmia, and you’d like to learn more about it, join PatientsLikeMe and connect with others like you today.
In the spirit of the New Year, here are some highlights from our recent newsletter. Read what patients like you have to say about what they’re most interested in learning from other patients this year.
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(Amy)What are you most interested in learning from other patients this year?
(bradley25 – Mood Conditions Community)I find I offer advice to patients more often than I listen. Offering advice helps me; it makes me think about what I am suggesting. More often than not, I find I offer good advice that I do not necessarily follow myself. Hearing the words come out of my mouth can cause me to think about why I may not be doing what I am suggesting and to make changes in my own life.
(mrskidneysurvivor – Transplants Community)There is not any one thing that I can say I am most interested in learning from other patients like me because I gain knowledge and insight from all patients who have had a transplant or who are waiting for one. We all have experienced or are still experiencing similar situations and take similar medications and cope with our day-to-day health, and I learn from that.
Mine has gotten so bad that I have regular grand mal seizures from time to time, and sometimes it’s hard to carry on a conversation without looking weird.
(prelado – Parkinson’s Disease Community)Of course, how they’re doing with their medicine, mainly if it is the same as mine.
(irishtxn – HIV Community)How to keep unwanted stress out of my life! It’s hard enough being one of six siblings living in the same town, much less [being the one living] with our mother. I’m not getting any real support from them as I’d like.
My siblings do take care of my mother’s prescription costs, but they rarely offer to come in and get my mother out for while. I might rephrase that [it would be nice] to ask her to their homes. She rarely ventures away from the house unless it has something to do with the church. Never gets to see the other children unless it is a holiday such as Christmas.
(slicky – ALS Community)I am like any other patient. I have not experienced everything. There is always something new to learn, and I think the best way to learn is to ask other patients on this site. The doctors can tell you what they know from reading books or other doctors, but getting knowledge from patients firsthand is the best way to learn how to cope or [determine] the best equipment to use, or the best treatments.
I am not saying every comment on PatientsLikeMe is right, but most of the information you get on this site really is valuable to all patients and their caregivers. The best thing is you can choose to try it for yourself or ignore it. It really is amazing to see all these patients come together to help one another. There is no stupid question. If you want to know, just ask and you will get a response.
And the best thing is it is from people all over the world, so some countries may have different studies or trials or meds we do not have here in the U.S. I have talked to people all over the world who have asked me how I have had ALS so long and what do I do to keep going. I tell them my regimen. I also tell them I can only tell them what seems to work for me, as most everyone knows ALS affects each of us differently, so what works for one person may not work for another.
(sunnyt – Fibromyalgia/CFS Community)When I discovered PatientsLikeMe it was a God-send! It was so good to know I was not alone in this. Most people do not believe what we go through. It is so hard to explain the pain and tiredness of this. I know, I was once one of the doubters.
This year I would very much like to learn how other deal with this, for one. And what treatments others use also, more alternative treatments. The list goes on…like how to cope everyday with not knowing how you are going to feel, where you will hurt or how tired you will be.
I am sure of one thing, I will probably find other answers to questions I did not even know I had! I can not thank PatientsLikeMe enough for the support and information I have gotten in the past year.
I don’t really know what I plan on learning this year. I really haven’t given it a lot of thought since I am so busy at home with family and work, and now I am going back to school part-time. I know everyone is just trying to get back to normal after the holidays. But I live in a family where nothing ever slows down. Believe me, you want it to, but it won’t. I do learn more about seizures (epilepsy) each year.
(Sapphyr – MS Community)As usual, tips for living with a disability that have actually worked.
Earlier this month, PatientsLikeMe was fortunate enough to attend the 64th Annual Meeting of the American Epilepsy Society in San Antonio, Texas. We were there to spread the word about PatientsLikeMe to some 4,000 attendees including epileptologists (physicians specializing in the treatment of epilepsy), neurologists, nurses, and researchers. We had a great spot on the booth of our partner UCB, which featured a large display for us to show the site to conference delegates and answer any questions they might have. Some of the typical questions we got were:
“Is this free for patients to use?” Answer: yes!
“How do patients record their seizures?” Answer: they can very quickly and easily enter both the frequency and severity of each kind of seizure they had during the week
“Can I send you some patients?” Answer: definitely!
“What kind of research can you do with the site?” Answer: stay tuned…
We were also there to present a poster comparing our data to another large data set, the Pharmetrics insurance claims database. Now, we know reading about statistics isn’t the most thrilling of subjects, but the idea was to answer another important question we hear all the time: “How biased is your community?” Biases are important because they affect the quality of the research you can do and the conclusions you can draw from your findings. In our case, an early comparison of our data against a claims database suggests that our community members are more likely than the wider epilepsy population to be: i) female, ii) in their 30s-40s (more people tend to experience their first seizure either in infancy or old age), and iii) on multiple medications to treat their seizures (“polytherapy”). We want to be transparent about understanding our biases and sharing them with the world, so you can click on the poster below to see the exact findings we presented.
The conference was also a great opportunity to meet other leaders in the online epilepsy space, such as our friends at CURE Epilepsy.org, Epilepsy.com, Seizuretracker.com, and to meet with researchers from an exciting online project called the “Managing Epilepsy Well Network.” In many ways epilepsy is leading the way in online resources and we hope next year we might even convene a special meeting for us all to share ideas on the best ways to help this important patient community.
Our last opportunity to spread the word about epilepsy fell upon our Chairman and Co-Founder Jamie Heywood. He spoke to some of today’s leading epilepsy doctors in the world about how we can help patients answer the question: “Given my status, what is the best outcome I can hope to achieve, and how do I get there?”
Posted by Lori Piscatelli Scanlon | November 5, 2010
Did you know November is Epilepsy Awareness Month? In honor of the month and to help raise awareness of epilepsy, here is the first in a series of blogs about our Epilepsy Community members’ experiences with this disease. To kick us off, let’s meet tonialpha, a three-star member and PRO who recently sat down with us to give the following interview in our monthly newsletter. Read on to hear more about how tonialpha maintains perspective, passes the time and learns from PatientsLikeMe.
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(Amy) What are you most proud of?
(tonialpha) I am most proud of life. Life is environment. It is inside and out! We see the beauty and the turbulence. It is how we see it and take it.
(Amy) How do you maintain perspective?
(tonialpha) I need to review, review, review, review! My perspective of things sometimes leaves me due to stress, letting things overbear my thoughts and mutter my mind. I need to step back, take a walk or go in the bathroom and read, call a friend, text a friend or look in the dictionary when I am confused. Taking a walk outside helps me, when I am alone and can rationalize.
(Amy) What is your favorite hobby or pastime?
(tonialpha)Walking and reading.
(Amy) Tell us the most important thing you’ve learned at PatientsLikeMe.
(tonialpha)I noted stress caused seizure increase, and with less stress, my seizures decreased. My clusters seemed to have relinquished. Also, I have been able to speak to my epileptologist about the frequency easier.
Last month, PatientsLikeMe announced our partnership with biopharma leader, UCB, to launch a new community for people with epilepsy. Below is an interview with UCB’s Vice President of Clinical Research, Peter Verdru, MD. David S. Williams III, head of PatientsLikeMe business development, recently spoke with Peter about the forthcoming epilepsy community, adverse event reporting, and the partnership in general.
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(David) UCB is known as The Epilepsy Company. What’s your goal in partnering with PatientsLikeMe to create a new community for people with epilepsy?
(Peter) As patient-centric companies, UCB and PatientsLikeMe are both committed to advancing research and improving the lives of people with life-changing conditions. UCB has a long-term commitment to the epilepsy community – so a partnership with an organization like PatientsLikeMe seemed only natural.
Our goal with this partnership is to provide this community to patients with epilepsy to help them manage their disease. Additionally, the community will generate patient-reported outcomes that may help UCB better understand how patients live with epilepsy and help advance epilepsy care. We anticipate patient-reported outcomes data across treatment groups for seizure severity, number of seizures, symptoms, adverse events, health-related quality of life, and co-morbidities, among other things. Using this knowledge for our future clinical research programs would be a logical next step, leading to an even better understanding of what future treatments could offer or what type of patients would gain additional benefit.
(David) This partnership is said to give patients a voice in advancing research. How so?
(Peter) This community will give patients the tools they need to measure their own outcomes. Participants will record their real-time, day-to-day progress in controlling their seizures and achieving their treatment goals, and share that with the community to help other patients, caregivers, researchers and industry learn more about the disease. Tracking their disease over the long-term may help patients and physicians work together to evaluate the impact of their treatment. Eventually, clinical research programs might also benefit from the long-term data these patients are sharing.
(David) Through the partnership, both companies will be working to design and deploy a system that allows for adverse event reporting to the FDA. Why?
(Peter) UCB has an ethical and legal responsibility to report adverse events associated with our drugs. If adverse events for any UCB drugs are mentioned on the site, UCB is required to report these directly to the U.S. Food and Drug Administration (FDA). Therefore, we are working to develop and deploy a solution that will allow us to assess and process potential adverse events, report them to the FDA, and capture them in the UCB safety database.
(David) What’s the most exciting part of this initiative for UCB?
(Peter) We’re excited to be taking a leadership role in the pharmaceutical industry to create a community that will give patients a forum for showing their treatment outcomes. Patients are really the experts about how epilepsy impacts their lives.
UCB is focused on bringing new treatments to patients with severe diseases like epilepsy. We sincerely believe this unique partnership will bring real value to the large community of patients, families and caregivers
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.
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In a recent series on patient choices, we’ve highlighted a lot of the decisions patients like you have to make on a daily basis. A few weeks ago, 
