Manage your epilepsy like a PRO

Posted February 11th, 2010 by

Ever wonder how epilepsy affects the patient — the whole patient? A patient-reported outcome (PRO) is a questionnaire commonly used in the clinical world to asses a patient’s quality of life (QOL) for research studies. Most of the time patients never get to see their test results, much less see them plotted over time. That’s a shame because many of the best PROs were designed with the help of patients talking about their condition in their own voice.

Patients in our epilepsy community can now access a series of PROs to help understand the effect of their disease on everyday life and have a voice in real-world, real-time research. The best part is that once they’ve completed the questionnaires (which should take about 20 minutes) they get to see summary findings of how they compare to other members in the community, plus a summary of their overall physical, mental, and social quality of life is displayed on their profile and their patient icon.

This is an ambitious project; we’re looking to get data from thousands of patients with epilepsy at 3 distinct time points. Through this shared goal for the community, patients are pulling together and encouraging one another to have a voice in research.  After all, the more data is in the system, the more insight every individual can gain from taking part!

PatientsLikeMe member pwicks


10 Comments

  1. I’m a 49 yr. old stay @ homemaker and had Epilepsy most my life.It keeps me from driving and doing many other things I feel I could do. I can’t work outside the home because i have to depend on people. I take meds dor my grand-mal seizures but they have never completley kept my seizures under-control,and the head aches do get old and biting the tongue which is the most painful. I feel people with Epilepsy nwwd to be heard more. LRW50

  2. Amen! Yes we need to be heard more. I also believe that we (meaning I) are our own worst enemy–when I was first diagnosed, my mother told me that I shouldn’t “tell people.” That attitude of having something other people shouldn’t know about, has followed me most of my life. And I never did tell other people. Until now–and I am glad to have this website. Reading a PRO will confirm a lot of things I have experienced over the years and thought I was alone in.

  3. I just wanted to let you know that is so wrong for your mother to keep your seizures a secret.If you were out with friends and had a seizures and they didn’t know what to do,how would your mother feel if something tearable happened to you.I think it’s important for people around us should know that we have epilepsy.When I was younger. I wear a Med-Alert bracelet so If something does go wrong they would know what to do.I think it’s important for all epilepsy patients to wear one.

  4. Yes we do need to be heard more, and not be ashamed of who we are. Face it, this is a part of us, whether under control or not.
    I have had it all my life, (diag when I was 23, I am 43 now) have have the brain surgery to “correct it” to no avail. But I keep on trucking, and yes, wear a med ID, and am sure that all my friends & family know.

  5. At the beginning of seizures when I was around 13 my family were Christian Scientists we would pray and speak to the Christian Science practioner and was told of Jesus healing a person w/ sz. I felt I would be healed by listening and praying about my seizures. I felt I could overcome these spots in my right eye that made me nauseated and I would pass out.
    As the seizures became more often, I would be in public and an ambulance would be called. I was a little confused when I was younger why I could not be healed. I went to a private school that my parents went to, they felt I was not healed and asked me to leave. It was confusing and frustrating.

    When I was continously being picked up by ambulance. They told my mom that they found something abnormal on a special xray. The doctor told my mom that I needed surgery. I started taking dilantin. My EEG was abnormal but she felt that prayer would help and I stopped taking the medication.

    When the emergency room staff talked to my mother several times and convinced her to go back to the Neurosurgeon and maybe the medication would help. He tried to convince her that I needed surgery.

    While in college my seizures were better, and I wanted to be a police ofcr. I found the job stressful and my seizures increased. While in college, I had a grand mal during class. The college reported to the DMV. I lost my license and had to decline from the police dept.

    The Neurologist felt I could work in the medical field. My seizures were getting in the way. I went to a different Neurologist and they did not see the same problem but he felt surgery would be beneficial. I had a left temporal lobectomy and my seizures changed. The doctor felt I should be on a low stress job. I trained as an EEG technician. I loved working w/ patients and listening what they went thru and felt grateful I did not have their problems. I worked 14 years.
    My last job was at a University and worked in research in Neurology. I met my husband and we married. Before we were married I had a second surgery to control my seizures. When I was pregnant, I had to go on bedrest and my seizures increased.

    When we moved to the East Coast, I had my second child and my seizures were out of control again. An Epileptologist stated to have a VNS, which I did have.

    Recently found out via a fine slicing MRI that they found the cause which is called Periventricular Nodular Heterotopia. This occured around the 4th or 5th week of Gestation while my mother was pregnant it was no ones fault. I still have seizures, asthma, and swallowing problems. I am grateful to help others when I can.

  6. Two of the worst effects of epilepsy for me have been giving up the ability ( Legality ) to drive and the fact that it has ruined my career. First, as a person : American adult it is “normal” to be able to legally drive. Second, it has had a major impact on my career ever since I was diagnosed. I was a Park Ranger with law enforcement part of my career for the federal government. Right off the bat they tried to fire me and I had to to change careers and move to keep work.

    Since that time, over 30 years ago I have had my positions “abolished” 8 times and it has in some cases required moving to keep working. I figured that was the best option financially and because I had Health Insurance. During those 30 years I have not had a promotion in spite of the fact that before even becoming a federal employee I had graduated with honors from UC Berkeley and since diagnosis I got my masters and only had one class without an A. The first major was in Forestry related to Recreation Management and my Masters in Silviculture ( The science of growing trees. )

    Sure I can not drive, but the majority of the US Forest Service employees these days do office work. This includes a wide variety of work and I can fit into many of those things. During my career I have had the job titles : Forest Technician, Park Technician, Park Ranger, Forester, Soil Scientist, Botanist, Ecologist, Computer Systems Analyst and Computer Programmer.

    I have worked in fire suppression in my early years when I could work on the line from a basic Fire Fighter to a Crew Boss to the point where I was on an InterAgency fire team as Supply Unit Leader and qualified for every job under that. During the last 10 years most of my fire time they would ask me to Dispatch and that even included out of the Interagency Fire Center for all of the USA. I have worked on wildfires from Alaska south to within 50 miles of the Mexican border in California and across to Florida and up the east coast to North Carolina.

    Rather than judging some one by thier race or sex, I think the same should be true of health. As long as a person can perform the work well I think hiring and promotions should be based on the qualifications to do the job.

  7. I agree with you Karl. Their qualifications to do a job should be based on how well they work and do it not on health. I think that is discrimination.
    I have had epilepsy all my life. Up until I was 13 I had pettie Mal and back then nobody really knew what it was, they just thought I wasn’t paying attention when I stared off into space and I would get in trouble for it. Flashing lights really bothered me but I thought it was normal. At 13 I had my first Grand Mal seizure. Nobody knew what it was and when I woke from it everybody treated me like I was dieing. I was tired and sore but I felt fine. I found out later that it was inherited. My Grandpa had pettie mal seizues, he could go some place and for get who he was, where he was going, where he lived, etc. and I had a cousin that had uncontrolable Grand Mal seizures.
    I tried so many different medicines to try and control it. I was taking Dilantin and Tegratol when I went into a seizure and burned myself really bad by taking tea off the stove. I went to Denver University where I had skin grafts and they changed my medicine to Depokote. That worked for years for me and I didn’t have very many seizures at all. I was even able to get my drivers licenses back. But my body built up a tolerance to the medicine so it stopoed working and my seizures were out of control again. My Neurologist put me on Lamictal and Kepper it help a little but I could no longer work and had be watched. My Neurologist referred me to a well known doctor in Denver and has done amazing things for people with Epilepsy and is also a teacher at the University. I finally got to see him. He changed my meds to Kepper and Topamax reevaluated me for a week. They kept me on an EEG for a week hoping that I would have a seizure and could pin point where my seizures were coming from in the brain. But it was generalized. That is when they suggest the VNS.
    I have had that implant in for almost 4 years. My seizures are still not under control but I don’t have very many of them. My Doctor has also prescribed Clozapam if I feel a seizure coming on or after a seizure cause sometimes I will have two or three right after another. I had one a year ago where I burned myself again and needed skin grafts and was in ICU for 3 weeks. I do work part time for a convenience store. I enjoy getting out and working and being around others. I do get embarressed when I wake up from a seizure and everybody is asking me if I am okay and I get annoyed. I don’t want anybody to think I am weak just because of my Epilepsy. I a capable of doing anything anybody else can do, I just have to take extra precautions. I hate it when people judge me because of it. Before they even get to know me. Because people are so miss informed or not informed at all Epilepsy scares alot of them away especially grand-mal seizures.

  8. […] on in our partnership, our colleagues at the biopharmaceutical company UCB proposed a longitudinal PRO survey: members of our Epilepsy Community would have access to surveys that reveal the effect of their […]

  9. i struggle with auras, petit mal, dejavu but mainly intense moments of fear . i also have prtial siezures and severe memory loss.
    i think everyone on this page is correct people should be made aware so many people have it but most peple i have told have never heard of it! i was diagnose in march and i am 13. my school nurse told the class about me but all she said was that i sometimes look like im daydreaming and to be nice so now everyone is intimidating and noone is aware either that or whenever i go out of class because i feel strange i am now begginning to hate school becuase of most people there including my friends because i can tell they are trying to get away because they find me embarissing.
    sometimes teachers roll there eyes at me too. and some boys used to call me ‘special’ in a prejudice way it makes me feel sad. lesa i found your comment very moving you have clearly been through alot and you have coped amazingly
    awareness needs to be raised particularlt in schools and work places in england where i live. i am going to ask our school to join the nse or something to start this.

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