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If you could make one change to epilepsy.com, what would it be?
Trying to plan for the future of a website can take some time and here on epilepsy.com we really want to know what will benefit YOU the most. So add a comment to my blog or send me an email at webmaster@epilepsytherapyproject.org to let me know.
Looking forward to hearing from you!
:o) Karen
epilepsy.com webmaster
Recent Comments on this Discussion
I just added a comment to a story about Keppra that I read. My suggestions were not listed. They were not put down at all. I have a problem with my fingers. Sometimes they keep pressing and pressing. It is part of my epilepsy, I cannot help it. Can a person's comments be posted even though the problem was epilepsy related?
peace R.C. I agree and have the same problem.
same topic and another place to prove the point .thanks Rick
"The second issue is the order of replies. A person can put his or her
reply ANYWHERE THEY WANT instead of in order. It's not a first come
first serve basis, so questions or statements may never get read or
addressed. People can write pages of information that are never looked
at because they don't have to be depending on where a person decided to
reply. Sadly this is short changing us as readers, but also as a
community." THANKS TO THIS PERSON FOR THE QUOTE.
I'm not sure I'm following this request, but I think that you are saying that your post isn't appearing where you expect it to appear and not that it doesn't appear? Or are you saying that you are accidentally making a post when you aren't ready for it to be submitted?
The issue of the order of replies is really more of a user problem and not a system problem that I need to find a way to address. (If you have any ideas, let me know them.) You can't actually just reply to anything anywhere in a post. For example, when someone replies to a Blog that you've posted, the most recent comment to it appears at the top of all the replies right below your blog. If any are indented, then they are replies to the reply. These also appear with the latest one on top. So. . . you could have:
Karen's Blog (created on 1/1)
Reply #2 (replied on 1/20)
Reply #1 (replied on 1/1)
- Reply to reply #1 (replied on 1/15)
- - - - Reply to the above reply to reply #1 (replied on 1/16)
In all of these, the most recent (latest date) reply is listed at the top -- it's just that all the replies aren't to the original Blog entry.
I hopes this helps clarify a bit. I will just have to find a place to show this with an image so that more people will have access to it. Do you ever check our help pages when you have trouble with a feature on our site? If I had something there, would you have found it?
Can I make it 2?
Both have to do with forum content. Multiple postings of the same article should be removed. There should be no reason why we have 5 or 6 of the same post. It is one thing for a post to be refreshed if there are new comments added to it or if someone posts a new topic, but to have the exact same post repeated over and over.........it creates other issues.
The second issue is the order of replies. A person can put his or her reply anywhere they want instead of in order. It's not a first come first serve basis, so questions or statements may never get read or addressed. People can write pages of information that are never looked at because they don't have to be depending on where a person decided to reply. Sadly this is short changing us as readers, but also as a community.
We must help and support each other
I sent an e-mail but I do not know if you received it. I would like to add a topic to the Epilepsy Therapy Project. The topic is care giving. I am sure that other epileptics beside me have this problem.
I also think that the colors could be made softer.
Thank you for listening to me.
Yes. You are welcome to make more than 1 suggestion. Especially because in this case there is actually something you can do to help me with it.
The most likely reason for seeing more than one of a post is that there was a delay between when the person posting it saw it appear and they hit their "Back" button on their browser and hit submit again -- and did this more than once because they thought their post didn't go up. This could be caused by their browser or their Internet connection. When you see this, you can click on the link in the small box in the beginning of the content that says "Flag content" and I will get an email notifying me to look at this. When that happens I can delete the extra, identical posts. Or you can just email me directly at webmaster@epilepsytherapyproject.org and let me know which post it is and I'll delete the extras. I look for these on an almost daily basis, but depending on how many posts there are, sometimes I miss them -- and occasionally I take a vacation day or two and then I miss some of them.
The second issue is really more of a user problem and not a system problem that I need to find a way to address. (If you have any ideas, let me know them.) You can't actually just reply to anything anywhere in a post. For example, when someone replies to a Blog that you've posted, the most recent comment to it appears at the top of all the replies right below your blog. If any are indented, then they are replies to the reply. These also appear with the latest one on top. So. . . you could have:
Karen's Blog (created on 1/1)
Reply #2 (replied on 1/20)
Reply #1 (replied on 1/1)
- Reply to reply #1 (replied on 1/15)
- - - - Reply to the above reply to reply #1 (replied on 1/16)
In all of these, the most recent (latest date) reply is listed at the top -- it's just that all the replies aren't to the original Blog entry.
I hopes this helps clarify a bit. I will just have to find a place to show this with an image so that more people will have access to it. Do you ever check our help pages when you have trouble with a feature on our site? If I had something there, would you have found it?
Thanks!
:o) Karen
epilepsy.com webmaster
the one thing i would change is to link the reply tab to the people story page so that the person that added the comment would be notified of the message sent area. reason. it has been difficult to find where others have posted a direct question. specificlly to me but in general to anyone that is needed. this will allow for a sub set of support that specific needs. thanks. i hope i made clear what i was attempting to say. rikk
Hi rikk,
I'm not sure I'm following you. Are you saying that you'd like to be notified when someone posts a reply to your blog or to something you have posted? (Like the reply I'm making now?) You should be automatically notified when someone replies to something you have posted. If it is something that you have responded to, then you might need to "subscribe" to that Blog or Forum to be automatically notified when someone else posts to it.
Or. . . are you asking for something completely different like for someone who posts to something you started to be automatically taken to your people story to read about you?
Thanks!
:o) Karen
epilepsy.com webmaster
peace R.C.
HI.......WHAT i AM NOW JUST ABOUT DONE WITH IS...
THE FACT i JUST POSTED THIS ABOVE ALL THESE OTHER POSTS ??
WHICH creates a big problem because folks ask a question that never gets answered .
and a lot of other problems like it just hijacks the thread and 2 people can go on and about a side topic and anyone posting "on the topic" is shut out .
also makes it huge problems for folks doing research here . .
the answers in these topics are the key to it all and have provided me ands others with valuble imfo. more than anywhere else in the world .
If I would have posted this in the bottom "where it goes" others would have read it and the posts.
I will keep posting on this topic thanks Rick
Hi Karen,
I have something I would like to add. If it's not to much work we used to have this feature where we could pm or leave messages for our buddies outside of chat. I think everyone would LOVE to have the feature back! So many I talk to are upset and sad that the feature is gone :( I would love to be able to pm and leave messages without going into chat when it is really busy. I feel like I am ignoring everyone else when I go in there to talk to one specific person and just leaving a personal message to someone whom you have no seen in awhile is a nice touch I think. I know that people don't really like giving out there emails either, not everyone is comfortable with that. Anyway I would LOVE LOVE LOVE to see that feature return. If it is even possible. And if I could make one more request...I would like to know if we could see who is in chat, there is a reason though lol lately it has been super busy and I have a hard time keeping up. But I hate going in then leaving (again makes me feel bad) is that a possablity??
Thanks so much for all the work you do,
Sassy
HI KAREN, THE ONE THING I WOULD LIKE TO SEE CHANGE IS PICTURES OF PEOPLE MOVING........OUCH! I HAVE TO BLOCK THAT PART OF THE SCREEN WHENEVER THEY COME ROLLING BY OR WALKING IN. SEIZURE-TIME THERE.
AND YES, I WAS TRYING TO FIND COLINA'S GUESTBOOK TODAY SO I COULD SAY HI, AND SEVERAL OTHER PEOPLE'S GUESTBOOKS WHOM I KNOW HAVE THEM, AND I GOT NADA, ZILCH EXCEPT FOR SPIZ AND ADZ.
I KNOW THIS IS MORE THAN 1 THING, BUT I FIND THE EXPLANATIONS OF DIFFERENT TYPES OF SEIZURES VERY LIMITED. I CAN'T FIGURE OUT HOW TO LEARN MORE BEYOND THE EXPLANATIONS GIVEN.
AND I DO SO WISH I WOULD STOP GETING THE MESSAGES THAT I AM NOT A MEMBER AND ACCESS IS DENIED, BUT WE ARE WORKING ON THAT ONE! THANKS, HOPE YOU HAD A GOOD DAY!
I WISH YOU PEACE, LOVE, BLESSINGS, JOY.........JAN
I USE ALL CAPS FOR THE VISUALLY IMPAIRED.
i would let people deleet posts when they feel unwelcomed here due to nasty mentorship
You can delete your post. Just "edit" it and at the bottom you should have the option to delete.
I am not aware of any nasty mentors on our site, so if you're having a problem with any of them then you should send me or our Resource Specialist an email with details.
:o) Karen
epilepsy.com webmaster
HI JAN.
THAT WAS 2 THINGS. LOL.
THE FIRST ONE I'M BEING TOLD ISN'T MOVING FAST ENOUGH TO CAUSE A SEIZURE SO YOU SHOULD JUST NOT FOCUS ON IT. (IF THIS IS INCORRECT FOR YOU, PLEASE LET ME KNOW.)
THE SECOND ONE. . . IF THE PERSON YOU ARE LOOKING FOR IS ON YOUR BUDDYLIST THEN YOU CAN GO TO THE TOP OF THE PAGE AND CLICK ON "MY BUDDIES". FIND WHO YOU ARE LOOKING FOR AND CLICK ON THEIR USERNAME. THEN CLICK ON THE "EMAIL THIS USER" LINK BELOW THEIR PICTURE. I KNOW FOR YOU THIS COULD BE DIFFICULT BECAUSE THE TEXT IS SO SMALL, BUT HOPEFULLY YOU CAN DO A CNTRL++ AND IT WILL MAKE THE TEXT LARGE ENOUGH FOR YOU TO EASILY READ.
HOPE THIS HELPS.
:O) KAREN
EPILEPSY.COM WEBMASTER
HI KAREN, YES, IT WAS MORE THAN TWO THINGS, SHE SAID WEEKS LATER! THE FIRST ONE I WAS AGREEING WITH COLINA, I THINK.........I MAY HAVE WRITTEN THREE......I DIDN'T CHECK JUST NOW. THE MOVING PHOTOS.....YES, I SEE THEM WITH MY SEEING EYE, AND THE BLIND EYE IS THE ONE THEY ARE CLOSEST TO. THEY DO BOTHER ME AND I DON'T KNOW IF I HAVE HAD A SEIZURE FROM THEM, BECAUSE I CAN'T ALWAYS TELL. IF NO ONE ELSE HAS A PROBLEM WITH IT, DON'T WORRY ABOUT IT. IT JUST SEEMS FOR PEOPLE WHO ARE PHOTOSENSITVE, (AND I AM NOT SURE IF THAT IS PART OF BEING PHOTOSENSITIVE SO MAY BE CALLING IT THE WRONG THING) IT WOULD CAUSE SEIZURS. I COVER THAT SIDE OF THE SCREEN WITH MY HAND IT BOTHERS ME SO MUCH...........BUT FOR ONE PERSON, JUST LEAVE IT THERE!
NO, I STILL CAN'T GET THE INFO ABOUT PEOPLE. I WILL HAVE TO CHECK BACK IN THE EMAILS WE HAVE BEEN SENDING AND SEE WHAT THE 'VISTA' GUY WROTE! IT IS FRUSTRATING, I MUST SAY. LATER, HUGS, JAN
I WISH YOU PEACE, LOVE, BLESSINGS, JOY.........JAN
I USE ALL CAPS FOR THE VISUALLY IMPAIRED.
Hi Karen. What I'd like to see is not something new but the one thing I miss most. Simplicity. One in particular is that we used to be able to just click on someones name and go straight to their blog. Now when you click on a name the community profile drops down and most of them are "not public" so then you have to go to blogs and scroll around or type in users name in search blogs. Then you have to weed through all the google suggestions. Even clicking on your buddy list names doesn't take you there and so many members here have blogs or stories but have not made a community profile so the search is on. Alot of sites I've seen you click on the name and it goes directly there. The member has the option there of being public or "allow friends only". The community has grown so much that it has become overwhelming keeping up with all posts and getting to know new members. Community forum is fine but for blogging I'd prefer to keep it more personal. I'm thinking alot of my buddies would agree.
Ohh there's so much but I will respect the thread and stick to the 1 thing.
Thank you for giving us this opportunity, Colina.
Ditto! I agree!
I completely agree! It would be great if a person could get around more quickly. Thanks so much for your suggestions!
Hi Colina,
Thank you for this feedback. I wasn't here "before" so I'm interested in what you used to have that you liked and wish that you still had. I will add this to my list. I understand how frustrating it is to try to learn about someone using search on our site since they could come up many times if they are active in the community.
If you have other suggestions or "wishes" please feel free to email me anytime with them. I can't make promises about if or when they might be fulfilled, but without them I can't even try to do them.
:o) Karen
epilepsy.com webmaster
Hi there Karen,
First of all thank you for this website!!! I was wondering if you could change it so that in our profiles, we can pick more than one answer? I think I speak for alot of people when I say that I take more than one medication, and that I have more than one intrest. As far as I can tell , that is the only thing wrong with this site. :-D
Thanks again,
Thank you for the feedback. Hmmm...I thought we had changed that. I'll look into that again. This is definitely on our list too!
:o) Karen
epilepsy.com webmaster
there are true inspirational stories all over the place,But how would we keep them in the forums?
what about a different forum topic of professional sports athletics or a similar category?
stories like this should be veiwed a million times before going down i say:
Alan Faneca, at the Jets training facility in Florham Park, had his first seizure at 15. He takes six pills a day to control the condition.At the weekend bonfire parties, Bobby Yates palled around with the football team, blasting his car stereo and flirting with girls in the open fields of Rosenberg, Texas.
A few feet away, the big kid who played with Yates on the offensive line at the local high school bounced from conversation to conversation, blending in with the preppies, cowboys and jocks.
In this football-crazed town about 30 miles southwest of Houston, everyone knew Alan Faneca.
He was funny, but not a prankster. He was the best football player at Lamar Consolidated High, but never bragged.
And he had epilepsy.
Long before the Jets signed Faneca to a 5-year, $40 million contract last March -- the biggest free-agent deal in franchise history -- the kid with a neurological disorder that produces seizures refused to hide behind the stigma of it.
"My friends needed to know if something happened to me," Faneca said. "So many kids with epilepsy don't tell anyone because of that fear of what people will think."
Faneca experienced his first seizure as a 15-year-old on Christmas Eve. He awoke in the middle of the night at his great-grandparents' home in the countryside, overcome by a strange desire to go somewhere. He wandered through the house, crying and screaming.
Faneca dismissed it as a nightmare. But it happened again.
And again.
He told his friends everything.
"None of us knew what we were doing growing up, but we tried to be as best prepared as we could," Yates said. "We had questions, and he was willing to answer any of them, so we could figure things out together. We genuinely cared, and we wanted to look out for him."
Faneca underwent a battery of tests before doctors diagnosed him with a form of epilepsy, a brain disorder that afflicts more than three million Americans, according to the Epilepsy Foundation of America. About 200,000 new cases of seizure disorders and epilepsy are diagnosed each year.
Faneca's seizures, caused by brief electrical disturbances in the brain, were characterized as "petit mal," much milder than the convulsions often depicted on television.
"We worried about his ability to continue and have a normal life," said Faneca's mother, Liane. "Everything about a diagnosis of epilepsy is scary."
The exact cause of Faneca's disorder was unknown, but doctors believed that it may have been brought on by either one of two concussions he suffered playing basketball as a child or the head trauma from falling off a homemade bouncing toy on springs.
Faneca, who takes six pills every day to control the condition, hasn't had a seizure since he was a teenager. But when his neurologist first gave him the green light to continue to play football all those years ago, he needed to double-check.
"He said it so fast that I had to ask him, 'You know what football is, right?'" Faneca remembered with a laugh. "But he was sure that it was something I could do. So I did it."
A LEGEND ON THE BLOCK
Don Carter was hauling hay and working cows on his Rosenberg farm last week when he decided to check his answering machine.
"I don't usually even look at these messages," Carter said in a Southern drawl. "I usually let my wife do it. But I'll tell you what, I wouldn't want to miss talking about Alan Faneca for anything."
The retired high school football coach has a catalogue of memories to share about the biggest, baddest, toughest lineman that ever put on a Lamar uniform.
"Alan wasn't just blocking those guys, he was dominating them," said Carter, who coached the offensive line. "He was one of those guys who could make you look like a real good coach, I guarantee you. Oh, and he wasn't a prima donna."
Faneca was a giant for the smallest Class 5A school in the state, a 6-foot, 5-inch, 300-pound bulldozer, who became the only offensive lineman to win the coveted Houston Touchdown Club's Player of the Year award.
He shined under the Friday night lights, carving out his legend one pancake block at a time.
"It was like being part of a brick wall," Yates said. "Even if the kids were expecting it, they just got waylaid! It was crazy. He would knock people down with just a swing of an arm."
Thanks to support from his friends, Faneca battled through several epileptic episodes like the time he awoke early one morning with an urge to walk to school. When his buddies spotted him wandering the halls in an old pair of shorts and T-shirt he had worn to bed the night before, Faneca snapped out of it and went back home to change.
It never affected him on the field.
"He had it. He knew it," Carter said. "But it didn't slow him down a minute. The epilepsy was not a factor."
There was more to Faneca than brute strength, size and speed. He was a natural with near-perfect blocking technique. He had "a sixth sense for knowing how long to stay on a block and when to release and get on another one," Carter admitted.
Football factories like Penn State, Tennessee and Alabama took notice of Faneca's skills before he chose LSU.
"They were awed that he was 17 years old," Carter said. "They were really amazed."
Four years later, so was a strong-jawed NFL coach of a tradition-rich franchise.
SOLID AS A STEELER
Bill Cowher trusted his eyes.
Every time the Steelers head coach watched Faneca on film or in person, he was blown away. Faneca, an All-American right guard as a senior at LSU, was almost too good to be true.
The Steelers, like the rest of the league, did their homework on Faneca's epilepsy.
"He really had come to grips with it and had it under control," said Cowher, who currently works as a CBS studio analyst. "When we talked to our medical people and knew it wasn't an issue throughout his college career, we weren't really concerned."
So, Pittsburgh selected him with the 26th overall pick of the 1998 NFL Draft, plugging him into left guard, where he flourished for a decade.
Faneca, a seven-time Pro Bowler, helped the Steelers win Super Bowl XL in 2005, providing a key block that sprung Willie Parker for a 75-yard touchdown, the longest run in Super Bowl history.
He quickly became one of Cowher's favorites.
"Alan was a gauge for me," Cowher said. "You have to have a few of those players who you can trust. He was a voice of reason. He was like E.F. Hutton -- when he spoke, everybody listened. He wasn't a guy that would talk to the team very often, but when he did, he was very impactful."
Faneca's relationship with team management slowly eroded when Cowher left after the 2006 season. When Faneca's desire to renegotiate his contract before the start of last season fell on deaf ears, the relationship fractured for good.
He also learned that his infant daughter Annabelle had Sturge-Weber Syndrome, a neurological disorder that caused seizures.
His professional and personal life at a crossroads, Faneca knew his days in Pittsburgh were coming to an end.
"Am I surprised? No," Cowher said of the Steelers' decision not to re-sign Faneca. "You've seen it before. I don't think it was a reflection of Alan as much as it was a philosophy that Pittsburgh has (with) players going for that third contract. I know that Pittsburgh really appreciated what Alan did for their team and their city. But it's a philosophy that Pittsburgh has had, and it's worked pretty well for them."
After the season, Rick Smith, Faneca's agent, explored his client's options. Three suitors emerged -- the Jets, 49ers and Rams.
When the clock struck midnight on March 1 - the official start of the free-agent signing period -- Smith's cell phone rang.
A BIG PIECE IN JET PUZZLE
Mike Tannenbaum believed in his heart of hearts that he had a good story to tell.
The Jets may have been coming off a 4-12 season, but the general manager was convinced a change was coming.
He targeted the 31-year-old Faneca, an ideal fit to replace left guard Adrien Clarke, who struggled after the Jets traded Pete Kendall to the Redskins before the 2007 season after a bitter contract dispute.
"We knew there were a few spots where we had to be pretty aggressive with," Tannenbaum said. "Signing Alan was just part of a bigger picture plan. Once free agency started, we had to act quickly."
Tannenbaum wasted little time signing Faneca to the richest contract in NFL history for an offensive lineman (until the Dolphins signed No. 1 overall draft pick Jake Long a month later.) The Jets doled out $21 million in guarantees for the durable Faneca before locking up free-agent right tackle Damien Woody and linebacker Calvin Pace to highlight their free-agent shopping spree.
Faneca's signing provided an added bonus months later when Tannenbaum was wooing Brett Favre. The 6-5, 307-pound lineman played an important role in landing the future Hall of Fame quarterback.
"When you get a guy of Alan's accomplishments on your team, it's a good referendum on what a really well-known, highly accomplished player thinks of us," Tannenbaum said. "Adding Alan just added to our credibility."
Faneca, who will make his 101st consecutive start today, has already made an impact with his new team. Playing between left tackle D'Brickashaw Ferguson and center Nick Mangold, the veteran has been happy to impart some wisdom.
"He's seen a ton of stuff in his 10 years," Mangold said. "He's able to share that knowledge with us and help out, which is fantastic."
The offensive linemen flood him with questions at practice, in the film room and even during their weekly Thursday night dinners.
"Just look at everything he does," Ferguson said. "It's very inspiring."
thank you
brodie - would you please include an attribute for where you copied your information from? If it didn't come off our website the very least I really need you to do is to make sure you put in your post where you're copying the content from (when you do copy it from somewhere) so that we can at least try to head off the copyright police.
Thanks!
:o) Karen
epilepsy.com
LOL!! GREAT COMMENT KAREN. BRODIE, YOU BEAT ME WITH THE LONGEST UNBLOG YET! CONGRATS!
I WISH YOU PEACE, LOVE, BLESSINGS, JOY.........JAN
I USE ALL CAPS FOR THE VISUALLY IMPAIRED.
more recent updates on ada laws,medical news ,sportsplayers updates and inspirational stories updates.
BALTIMORE (Ticker) -- Baltimore Ravens cornerback Samari Rolle on Wednesday revealed that he has epilepsy.
The condition has caused Rolle to miss six games this season, although he expects to play this Sunday against the San Diego Chargers. The 31-year-old had been listed in injury reports this season as having an "undisclosed illness."
Rolle said he has suffered three seizures this season and believes he has had minor seizures during the past 2 1/2 years.
"I'm feeling very good, more so emotionally," Rolle said. "The hardest part was going to games and (seeing) the fans. I heard all kinds of rumors about what I have. It's just been hard on my wife and my family, and I'm just happy to be back playing."
Epilepsy is a neurological condition which affects the nervous system. It is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition, such as low blood sugar.
The seizures in epilepsy may be related to a brain injury or family history, but most of the time the cause is unknown.
"It's under control now. That's the main thing. Now, I'm not scared," Rolle told the Baltimore Sun.
Rolle, who has 13 tackles and one interception in four games this season, praised the way the team handled his ordeal.
"(It's meant) that you're more than a football player to the organization," he said. "You're an individual and you're a person, first and foremost. They did everything they could. They told me I didn't even have to come back and play if I didn't want to, and I really appreciated that."
A Pro Bowl selection with Tennessee in 2000, Rolle has 470 tackles and 28 interceptions in 136 career games with the Ravens and Titans.
theres an inspirational story everywhere you look,though where are we keeping track of them all?maybe i read too much?wheres your research,put some players on the board,even if you want to look the players stories up from this list then post their stories that are inspiring towards our futures..
-------TEAMWORK NOW----
[Edited by webmaster > copied from http://en.wikipedia.org/wiki/List_of_people_with_epilepsy]
This categorised chronological list contains only those people with a firm and uncontested diagnosis made while still alive.
ActingName Life Comments Reference Bud Abbott 1897–1974 The straight man in the comedy team of Abbott and Costello. He had epilepsy all his life, and tried to control and hide it by drinking. [8] Ward Bond 1903–1960 A film actor. His epilepsy meant that he was rejected from the draft for World War II. [9] Danny Glover born 1946 An actor and film director who had epilepsy from age 15 to age 35. [10] Margaux Hemingway 1955–1996 A film actress and model who had epilepsy from the age of 7. Her death was attributed to suicide by an intentional overdose of phenobarbital, which is an anticonvulsant, but see the footnoted article for an alternative explanation. [11] Martin Kemp born 1961 Actor and former bassist with the pop band Spandau Ballet. He has had epilepsy since having two brain tumours in the 1990s. [12] Rik Mayall born 1958 A comedian and actor who was seriously injured and put in a coma for five days after a quad bike accident in 1998. Initially prescribed phenytoin prophylactically, he has since had two seizures, possibly due to not taking his medication. [13] Hugo Weaving born 1960 An actor who has taken anticonvulsants for epilepsy since his first seizure age 13. [14]
Leadership, politics and royaltyName Life Comments Reference Michael IV the Paphlagonian 1010–1041 A Byzantine emperor who had frequent tonic clonic epileptic seizures since adolescence. It was perceived to be demonic possession – punishment for his sins. His royal entourage were alert to signs of an impending seizure and tried to hide the emperor when ill. [15] Ivan V Alekseyevich 1666–1696 Older half brother of Russian Tsar Peter the Great. Ivan V was feebleminded, epileptic, and half-blind. Would have never become Tsar except for the support of his sister Sophia, who wanted to become regent over him. His sister, with streltsy, made Ivan V rule as co-tsar with Peter I (Great) (who had already been tsar for a few weeks). [16][17] Martha Parke Custis 1756–1773 The daughter of Martha Washington and step daughter of George Washington. She had seizures from early childhood and died during a seizure, aged 17. Unusually for the time, her parents did not hide her epilepsy and encouraged her to lead a normal life. They tried various treatments including mercury, valeriana, factitious cinnabar, bleeding, and spring waters. [18] Pope Pius IX 1792–1878 Had childhood epilepsy. [19][20][21] Francis Libermann 1802–1852 A Jew who converted to Christianity and studied for priesthood. Epilepsy prevented his ordination for many years. [3] Ida McKinley 1847–1907 First Lady of the United States from 1897 to 1901. Her epilepsy started in adulthood and was to become quite disabling and inconvenient. As was normal for the time, great efforts were made to keep this secret. Her husband, William McKinley would cover her face with a napkin when she had symptoms at dinner parties. [22] Antônio Moreira César 1850–1897 The brutal commander of the third Expedition in the War of Canudos. He had epilepsy since his 30s, which worsened on the way to Canudos. He was shot on the first day of battle and some blame the seizures for his military misjudgements. [23] Vladimir Lenin 1870–1924 First Premier of the Soviet Union. Lenin's final year was characterised by neurological decline and loss of function. In his last few months, he developed epilepsy. His seizures worsened and he died in status epilepticus, which had lasted 50 minutes. [24] Harry Laughlin 1880–1943 The director of the American Eugenics Record Office from its inception in 1910 to its closing in 1939. In 1922, he drew up laws for the compulsory sterilization of various "degenerate" groups, which included those with epilepsy. [25][26] Prince Erik, Duke of Västmanland 1889–1918 The youngest son of Gustaf V of Sweden. [27] Prince John of the United Kingdom 1905–1919 The youngest son of King George V, John had epilepsy from the age of 4 until his death after a seizure aged 13. The shame of his epilepsy, along with other neurological problems, meant he was kept from the public eye. [28] Rabbi Lionel Blue born 1930 A rabbi and broadcaster, best known for his contributions to "Thought for the Day" on BBC Radio 4's Today program. His epilepsy was diagnosed when he was aged 57 and is successfully controlled with medication. [29][30] Dave Longaberger 1934–1999 A businessman and founder of The Longaberger Company, makers of handcrafted maple wood baskets and accessories. He overcame epilepsy and a stutter, eventually graduating from high school aged 21. [31] Neil Abercrombie born 1937 A United States congressman who campaigns for increased funding for epilepsy research. He was diagnosed with epilepsy in his early thirties. [32][33] Rudi Dutschke 1940–1979 A prominent spokesperson of the left-wing German student movement of the 1960s. An assassination attempt in 1968, when he was shot twice in the head, left him partially blind and with frequent epileptic attacks. He drowned in the bathtub after suffering a seizure. [34][35] Tony Coelho born 1942 A former United States congressman who developed epilepsy aged 16, possibly as a result of an earlier head injury. This would lead to rejection by his family and the Jesuits for "possession by the devil".[36] He has campaigned as a congressman for disabled rights and chairs the Epilepsy Foundation's national board of directors. [36]
MusicName Life Comments Reference Jimmy Reed 1925–1976 An American blues singer. His diagnosis of epilepsy in 1957 was delayed due to an assumption that these were attacks of delirium tremens. He died after an epileptic seizure aged 51. [37][38] Neil Young born 1945 Singer-songwriter, formerly of folk rock band Buffalo Springfield. Disliked the effects of his medication; seeking personal stability as an alternative means of control. [39] Lindsey Buckingham born 1949 The guitarist and singer in the music group Fleetwood Mac was taken to hospital after a seizure while on tour, aged 29. His epilepsy was successfully controlled by anticonvulsant drugs. [40][41] Chris Knox born 1952 New Zealand indie musician (Toy Love, Tall Dwarfs) has addressed his epilepsy in such songs as "Lapse", and it is also referenced in his album title "Seizure". [42] Ian Curtis 1956–1980 The vocalist and lyricist of the band Joy Division was diagnosed with epilepsy aged 22. The cover of their album Unknown Pleasures resembles an EEG tracing, but is actually the tracings of the radio emissions of a pulsar. [43] Richard Jobson born 1960 Formerly the lead singer with the punk rock group, The Skids, now a television presenter and film maker. He has absence seizures. [44] Edith Bowman born 1975 Scottish television presenter and a radio D.J., who had epilepsy as a child. [45] Peter Jefferies born ca.1961 New Zealand musician (Nocturnal Projections, This Kind of Punishment). [46] Hikari Oe born 1963 A Japanese composer who has autism, epilepsy and mental retardation and has created two successful classical-music CDs. He is the son of Kenzaburo Oe, the Japanese novelist who won the 1994 Nobel Prize in Literature. [47] Adam Horovitz born 1966 Member of the music group Beastie Boys. [48][49] Mike Skinner born 1978 Also known as The Streets, he had epilepsy between the ages of 7 and 20. [50] Geoff Rickly born 1979 A member of the band Thursday, who discovered he had epilepsy while on tour. [51][52]
SportName Life Comments Reference Grover Cleveland Alexander 1887–1950 A major league baseball pitcher who tried to hide his epilepsy with alcohol, which was at the time considered to be a more socially acceptable problem. Ty Cobb said he "suffered hell on the field." [53] Tony Lazzeri 1903–1946 A major league baseball player who probably died after seizure that occurred when he was alone at home. [54] Hal Lanier born 1942 A major league baseball player and manager. He developed epilepsy after a severe beaning. [55] Tony Greig born 1946 A former cricketer and commentator who is involved with Epilepsy Action Australia. He had his first seizure, aged 14, during a tennis game but has successfully controlled his epilepsy with medication. [56] Buddy Bell born 1951 A major league baseball player and manager. [55] Bobby Jones born 1951 A former pro basketball player who developed epilepsy and a heart problem as an adult, but persevered with his game. [57][58] Terry Marsh born 1958 A boxer who was IBF world light-welterweight champion. His diagnosis of epilepsy in 1987, aged 29, forced him into retirement undefeated. [59][60] Greg Walker born 1959 A major league baseball player who collapsed on field with a tonic-clonic seizure. He had a further seizure in hospital that night and took anticonvulsant medication for the next two years. Walker had a childhood history of seizures until the age of 4. [61][62] Florence Griffith Joyner 1959–1998 An athlete with world records in the 100 m and 200 m. She developed seizures in her thirties, possibly due to a cavernous angioma that was discovered on autopsy. She died from asphyxiation after a grand mal seizure while asleep. [63] Wally Lewis born 1959 One of Australia's greatest rugby league players, national team captain 1984-89. After retirement from the sport he became a television sports presenter, but became disoriented during a live-to-air broadcast in late 2006. Medical tests revealed that he had epilepsy. [64] Paul Wade born 1962 Former Australian national football player and television sports commentator. Wade had epilepsy all his life but was only diagnosed as an adult. He kept it secret until he had a seizure on live television in 2001. Drugs weren't controlling the seizures so, in 2002, he had surgery to remove a scar in his brain. He is now seizure free. [65][66] Maggie McEleny born 1965 Four times British Paralympic swimmer, winning 3 gold, 5 silver and 7 bronze. McEleny has paraplegia and epilepsy. In 2000, she was made an MBE and awarded a Golden Jubilee Award by the British Epilepsy Association. [67][68] Jonty Rhodes born 1969 A cricketer who is involved with Epilepsy South Africa. [69] Tom Smith born 1971 Former Scottish international and Northampton Saints rugby player. Has had epilepsy since the age of 18. His seizures occur only at night, during sleep. He is a patron of the Scottish epilepsy charity Enlighten. [70][71] Alan Faneca born 1976 An American Football guard who currently plays for the New York Jets. He was diagnosed with epilepsy at the age of 15 and takes the anticonvulsant carbamazepine, which successfully controls his seizures. [72][73] Samari Rolle born 1976 An American Football cornerback who currently plays for the Baltimore Ravens. [74] Chanda Gunn born 1980 A goalie in the US 2006 Winter Olympic women's hockey team. Gunn was diagnosed with juvenile absence epilepsy at the age of 9, which was treated with valproic acid. Epilepsy meant that she had to give up her childhood sports of swimming and surfing, but these were soon replaced with hockey. [75]
Art and writingName Life Comments Reference Edward Lear 1812–1888 An artist, illustrator and writer known for his nonsensical poetry and limericks. His epilepsy, which he developed as a child, may have been inherited (his elder sister Jane had frequent seizures and died young). Lear was ashamed of his epilepsy and kept it a secret. He did, however, record each seizure in his diary. [76] Fyodor Dostoyevsky 1821–1881 A Russian writer whose epilepsy was probably inherited (both his father and his son had seizures). He incorporated his experiences into his novels – creating four different characters with epilepsy. Dostoyevsky's epilepsy was unusual in that he claimed to experience an ecstatic aura prior to a seizure, whereas most people experience unpleasant feelings. [77][78] George Inness 1825–1894 An American painter who had epilepsy from childhood. [79] R. D. Blackmore 1825–1900 Author of Lorna Doone. [80] Charles Altamont Doyle 1832–1893 Artist and father of Arthur Conan Doyle. His alcoholism and a violent outburst led him to be detained in an asylum. Whilst there, he developed epilepsy and severe memory problems. [81] Bjørnstjerne Bjørnson 1832–1910 Norwegian writer and a 1903 Nobel Prize in Literature laureate. Developed focal epilepsy following a stroke in the final year of his life. [82] Ion Creang? 1837–1889 A Romanian children's writer and memoirist who had epilepsy for the last six years of his life. [83] Joaquim Maria Machado de Assis 1839–1908 A Brazilian realist novelist, poet and short-story writer. He had epilepsy all his life, but was ashamed to mention it, using euphemisms when writing to friends. It is believed he had complex partial seizures, with secondary generalisation. [84][85] Dmitri Sinodi-Popov 1855–1910 A Russian artist, whose epilepsy interrupted his studies at the St. Petersburg Academy of Arts. [86] Minakata Kumagusu 1867–1941 A Japanese writer and naturalist. He had tonic-clonic seizures, with an aura that caused déjà vu. Postmortem MRI showed right hippocampal atrophy, consistent with temporal lobe epilepsy. [87][88] Vachel Lindsay 1879–1931 A poet who took phenobarbital for his epilepsy. [89] Laurie Lee 1914–1997 A poet, novelist and screenwriter, most famous for his autobiographical trilogy (which includes Cider with Rosie). His epilepsy probably developed after he was knocked down by a bicycle at the age of 10. He kept it secret and it only surfaced when his papers were read by biographers after his death. [90] Kyffin Williams 1918–2006 A landscape painter. His epilepsy ended his army career and may have prevented him marrying. [91] Max Clifford born 1943 A publicist known for representing controversial clients. He developed epilepsy at the age of 46. [92] Karen Armstrong born 1944 An author, feminist and writer on Judaism, Christianity, Islam and Buddhism. Her temporal lobe epilepsy went undiagnosed for many years. She wrote in her autobiography that when (in her early thirties) she was finally given the diagnosis, it was "an occasion of pure happiness". [93][94] Thom Jones born 1945 Author of short stories, many of which include characters with epilepsy. [95] Stephen Knight 1951–1985 An author who was known for his books criticising the Freemasons. He started having seizures in 1977 and in 1980, agreed to take part in a BBC documentary TV program Horizon on epilepsy. The producers arranged for a brain scan, which showed up a tumour. This was removed but returned in 1984 and despite further surgery he died in 1985. [96] DeBarra Mayo born 1953 Fitness and health author and writer. [97] Jago Eliot 1966–2006 Aristocrat, surfer and cyber artist. He died in his bath due to an epileptic seizure, which was recorded as a Sudden Unexpected Death in Epilepsy (SUDEP). [98][99] Kathy Sierra born 1957 A programming instructor and game developer who co-created the Head First series of books on computer programming. She had her first tonic-clonic seizure aged four. These were frequent and severe but greatly diminished by adulthood and were always preceded by an aura. [100]
MiscellaneousName Life Comments Reference Jean Clemens 1880–1909 The youngest daughter of Mark Twain. She had epilepsy from age fifteen, which her father attributed to a childhood head injury. Her epilepsy was not successfully controlled and at one point she was sent to an epilepsy colony in Katonah, New York. She was found dead on Christmas Eve in her bath aged 29. The cause of death was reported as drowning due to epilepsy. [101][102] Derek Bentley 1933–1953 Hanged, aged 19, for a crime his partner committed, Bentley had epilepsy and a mental age of 11. He was pardoned after a 45 year campaign, which included the film Let Him Have It, starring Christopher Eccleston. [103] Emilie Dionne 1934–1954 The third of the Dionne quintuplets. Emilie's epilepsy was only made public after her death at a convent in Sainte Agathe, Quebec. She died from the complications of a series of epileptic seizures. These were recorded at noon the previous day, 11pm, 3am, and 5am, but no doctor was called until after her death. Her death from epilepsy caused alarm, leading H. Houston Merritt to inform the public that "the mortality rate among epileptics is no greater than among non-sufferers". [104][105] Virginia Ridley 1948–1997 A woman who had agoraphobia, hypergraphia and epilepsy. Her eccentric husband Alvin was charged with her murder but cleared after the jury accepted that she may have suffocated during a seizure. She had not been seen outside her home for 25 years. [106] Don Craig Wiley 1944–2001 A protein-structure biochemist. He kept his epilepsy secret, did not treat it, and died under mysterious circumstances, possibly owing to a seizure. [107] Barry George born 1960 Initially convicted but later acquitted of murdering the British television presenter Jill Dando. Has epilepsy and mental health problems. [108] Daniel Tammet born 1979 An autistic savant who is gifted with a facility for mathematics problems, sequence memory, and natural language learning. He had temporal lobe epilepsy as a child. [109][110]
Retrospective diagnosisThe following people were not diagnosed with epilepsy during their lifetime. A retrospective diagnosis is speculative and, as detailed below, can often be wrong.
Name Life Comments Reference Socrates 470–399 BC Ancient Greek philosopher. It is speculated that his daimonion was a simple partial seizure and that he had temporal lobe epilepsy. [111] Julius Caesar 100–44 BC Roman military and political leader. He had four documented episodes of what were probably complex partial seizures. He may additionally have had absence seizures in his youth. There is family history of epilepsy amongst his ancestors and descendants. The earliest accounts of these seizures were made by the biographer Suetonius who was born after Caesar's death. [112][113][114] Elizabeth Monroe 1768–1830 The wife of James Monroe, fifth President of the United States. Some historians believe her illness was epilepsy. She is reported to have been prone to convulsions and was once seriously burnt after falling into a fireplace. [115] Napoleon I of France 1769–1821 French military leader and emperor. A paper by William Osler in 1903 stated "The slow pulse of Napoleon rests upon tradition; it has been suggested that his epilepsy and attacks of apathy may have been associated features in a chronic form of Stokes-Adams disease", which implies the seizures were not epileptic in origin. However, in 2003, John Hughes concluded that Napoleon had both psychogenic attacks due to stress and epileptic seizures due to chronic uremia from a severe urethral stricture caused by gonorrhea. [116][117]