In the Grip of the Unknown

There needs to be a discussion of work place discrimination attached to epilepsy. Not all people with Epilepsy have seizures all of the time. In some cases seizures can be extremely well controlled with medicines, and the medicine Kepprea is a real break through medication. Most people living with Epilepsy know what can trigger their seizures and employers need not be scared, but need to be more compassionate and/or tolerant. Instead, driven by ignorance, many managers terminate an employee once the find out he/she is Epileptic. It is a shame that companies will sacrifice losing a good employee out of ignorance and prejudice.

Epileptics suffer with an unkown, unpredictable disease. It is a shame they face losing their health benefits and receive scorn by ignorant, managers.

Yes, m51ngc5195!!! In my mind, we all must continue to dialog. For those of us living with "E" and/or seizure disorders, or it touches the life in some way of a family member, loved one or friend, there is nothing more important. I couldn't agree with your comment more. Your recommendations are right on! Thank you!

Jeanne Holland Newton

This article is awesome. I went through the surgical procedure 20 years ago and it worked wonders for me. But I never really understood the idea the brain is neurons firing in chaos until I read this.

Thanks m51ngc5195, I must agree with every point you make. We have a sponsored "Walk for Epilepsy" here and it took me 2 weeks of whining and a presentation before I could get my company to donate to EFA for this walk in April. This was a prime opportunity for EFA to speak up, but maybe Newsweek is somewhat guilty too. Don't get me wrong, Newsweek, I LOVE the articles, but it would have been nice to see some recognition given to the EFA, maybe a call to them to get their input or at least a statement of mission. Let's continue to SCREAM until someone hears us !

On balance, the articles in the April 20 issue of NEWSWEEK provides an important opportunity to open a continuing public dialogue on epilepsy and seizures, including the need to increase funding for information, research, education, and treatment through a combination of private donations and public dollars. For that all of us, persons who struggle day-to-day with epilepsy and seizure disorders should be generally pleased with the NEWSWEEK articles.

However, the name and work of the Epilespy Foundation of American (EFA) did not appear once in the articles. That was an incredible lost opportunity for that organization to breakthrough and become known as the "one-stop shop" for information, research, and support that occurs all too quitely within the fine work of the Foundation. I have argued repeatedly within the Foundation's eCommunities website area that EFA has been too cautious for too long in broadening public awareness and creating a continuing public dialogue about epilepsy, employment discrimination, and seeking donations to support the important work of the Foundaion, including the support it provides to persons with epilepsy and their families. How much longer must we wait for that story to be told, and for the Foundation to be known throughout the nation as "the national agency dedicated to the welfare of the more than 3 million people with epilepsy in the U.S." as it claims?

Parents seeking solutions should be particularly concerned about the failure of the Foundation in this area!

Within the articles, the work of organizations known as FACES (Finding a Cure for Epilepsy and Seizures) and CURE (Citizens United for Research in Epilepsy) were highlighted and a quote was taken from the American Epilepsy Society, but no mention, recognition, or quotation from or about the fine work of the Epilepsy Foundation of American (EFA).

Now part of the blame belongs to NEWSWEEK itself for failing to include a sidebar listing the names and contact information of all major organizations in the United States devoted to finding a cure for epilepsy or increasing the effectiveness of medications and other treatments. There was no mention of November as Epilepsy Awareness Month. The articles could have made the point that these token signs of recognition are not enough.

What can we do? Continue the dialogue! Take advantage of this opportunity and write letters to NEWSWEEK about your concerns, including the magazine's failure to include information about EFA and the importance of its work in your lives and your childrens lives. Push for greater public funding for research, and to broaden public awareness about epilepsy and organizations (including EFA) leading the charge to find cures, improve treatments, and offering support.

Thank you for your informative article ...

Epilepsy IS our family. Unwelcomed and unknown, it hit two of my sisters as they entered puberty. Not knowing anything about epilepsy, we thought we were watching them die. I stayed away away from them, in fear that I would get "it." Slowly, our family became educated in everything epilepsy -- even the pain of getting phone calls from strangers saying one of them was found writhing at the bus stop ... finding another lying at the foot of the stairs in convulsions ... gently holding and cradling one who is in mid grand mal ... then letting them sleep.

The most devastating was to see how the medications turned our our perfectly "normal" sisters into zombies.

Years later, epilepsy hit a third sister -- when she was 18. She started off with only stares ... then little episodes of incoherency ... then into full blown grand mals. After much medication experimentation, study and research, she decided to have the surgery. Our family spent many many months sitting with her in the neurology unit being tested ... wearing the Medusa Hat ... monitoring ... watching her continue to have seizures -- one in which she thought everyone around her was dying -- this was devastating to see her go through this. It has been 9 years since her surgery ... she is now controllable by medication, but we do know if she goes off, the seizures will return with a vengance.

The other two sisters are now in their 50s ... one still takes her medication, while the other has been off of hers for many years. However, she is concerned that as she is in menopause, this may stir up her epilepsy.

Just last month ... my nephew became an unwilling member of the seizure society. As a family who knows intimately, the physical, mental and social implications of epilespy ... with this latest news of our nephew ... all we can do is let out a sigh, teach our nephew and hope that this disorder does not wreak havoc on this young man's wonderful life.

Thank you for your informative article ...

Epilepsy IS our family. Unwelcomed and unknown, it hit two of my sisters as they entered puberty. Not knowing anything about epilepsy, we thought we were watching them die. I stayed away away from them, in fear that I would get "it." Slowly, our family became educated in everything epilepsy -- even the pain of getting phone calls from strangers saying one of them was found writhing at the bus stop ... finding another lying at the foot of the stairs in convulsions ... gently holding and cradling one who is in mid grand mal ... then letting them sleep.

The most devastating was to see how the medications turned our our perfectly "normal" sisters into zombies.

Years later, epilepsy hit a third sister -- when she was 18. She started off with only stares ... then little episodes of incoherency ... then into full blown grand mals. After much medication experimentation, study and research, she decided to have the surgery. Our family spent many many months sitting with her in the neurology unit being tested ... wearing the Medusa Hat ... monitoring ... watching her continue to have seizures -- one in which she thought everyone around her was dying -- this was devastating to see her go through this. It has been 9 years since her surgery ... she is now controllable by medication, but we do know if she goes off, the seizures will return with a vengance.

The other two sisters are now in their 50s ... one still takes her medication, while the other has been off of hers for many years. However, she is concerned that as she is in menopause, this may stir up her epilepsy.

Just last month ... my nephew became an unwilling member of the seizure society. As a family who knows intimately, the physical, mental and social implications of epilespy ... with this latest news of our nephew ... all we can do is let out a sigh, teach our nephew and hope that this disorder does not wreak havoc on this young man's wonderful life.

My son MIchael had infantile spasms and Lennox Gastaut syndrome. Thanks to a fabulous Dr. Resnick from Miami Children's.....after seeing a lot of doctors who couldn't help or even diagnose him.. he is still with us. We struggle with his condition every day; he goes to a special school where they have nurses on staff with Diastat for his status epilepticus type seizures. You've got to find the right doctor, arm yourselves with information, and become a vocal advocate for your cihld.

Thank you newsweek

i feel so bad 4 the girl

Dears Sirs
What gets my goat is that I have been seizure free for 21years able to drive a car, care for my kids and hold down a job.
As long as I took my meds on time I am okay! Now after all these years my neurologist wants to wean me off my medication. I'm shocked! Why? I know that if I take my meds i can remain siezure free, and if I don't, I could have another one. Why mess with a good thing? Dr's still have'nt figured out the cause, and all test come back normal. At the age of 48, l've learned to take medication on time and accept that I am epileptic. I'm terrified of having the meds removed so they can experiment at my expense. I'm not a guinea pig, and won't accept anything other than absolute proof. I feel so badly for those who have not gotten their seizures under control, and wish them the best. My case doesn't warrant review, but continued studies should be available to those less fortunate. Thanks for the forum.

Elizabeth Ziel
eziel41@gmail.com

My daughter Jacqueline has suffered from eiplepsy since 1999, she has lost her childhood, and is slowly outgrowing the beast. She is still not under control, and we have learned to live with the wave of good days or weeks and horrible ones. At almost 14 she is academically at about a 4th or 5th grade level, and before epilepsy she was gifted. It is a horrible disease and we must find a cure before it harms anymore children and destroys anymore lives.
Leslie Torresson

Thank you Newsweek for putting this on your cover. Let' s hope this will kick start some more conversation and action about such a devastating disorder.

My husband was diagnosed with epilepsy in 2001 (at age 33) and is still not fully under control. He had an episode of status that ended with him in a coma and on life support but thankfully he's since recovered with relatively little damage. Every day is a blessing for us, and we know we have to live life carefully but to the fullest. It's a condition that is so little talked about...I'm thrilled to see this as a cover story because people need to know more about it. My husband has had seizures in public and well-meaning folks did may wrong things in trying to help him, so the more EVERYONE knows about epilepsy, the better. Thank you, Newsweek.

My husband was diagnosed with epilepsy in 2001 (at age 33) and is still not fully under control. He had an episode of status that ended with him in a coma and on life support but thankfully he's since recovered with relatively little damage. Every day is a blessing for us, and we know we have to live life carefully but to the fullest. It's a condition that is so little talked about...I'm thrilled to see this as a cover story because people need to know more about it. My husband has had seizures in public and well-meaning folks did may wrong things in trying to help him, so the more EVERYONE knows about epilepsy, the better. Thank you, Newsweek.

i`m 38 and i`ve had approximately 8 seizures. i`m in a tight spot livin on countryside, partner in a construction bisnes and paying mortgage. if i lose my drivers licence i lose my house and partnership cause epilepsy isn`t excuse for mortgage.

i`m 38 years, had about 8 seizures and i still have my drivers licence. if i lose it i`m forced to sell my house on the countryside and my partnership in construction bisnes. that would be wise because i have to work with machine tools and i don`t wanna kill anyone with my car, but how i manage it? epilepsy isn`t any excuse for mortgage.

As a former patient of the NYU epilepsy center, I have to say that my experience was FAR from the "holistic" care that the writer describes is given there. The treatment that is offered there is medication, and only that. For people with acute epilepsy, who feel their only option is medication, then they are a good resource. For me, someone who had 2 seizures in my entire 37 years of life, it was the worst place to be. I was pressured into taking seizure medication, which I had never taken, and what ensued CAUSED me to have more seizures and to almost loose my life. I was never blood tested and there was never any investigation into the cause of my seizures. On my own I found out I was hypoglycemic and changed my diet and got off the seizure medication that was actually making my hypoglycemia worse. There are some people who thru diet, lifestyle and other therapies can be seizure free without meds. I know a man who claims that neuro feedback cured his son of epilepsy. Every human body is unique and it is important to find a doctor who will treat the patient, not the symptoms. I hope someday a medicine free treatment will be effective for all those suffering with siezures.