need to add title here

Preview: Fighting for a Cure

October 23, 2009 3:28 PM

More Americans are suffering from epilepsy than Parkinson's, cerebral palsy and multiple sclerosis combined. Katie Couric reports on a disease that may not be getting the attention it deserves.

Recent Segments
Scroll Left Scroll Right
Add a Comment
by MarkWMichalski November 12, 2009 12:51 AM EST
I was confirmed with epilepsy at age 5, but I had encephlitis at 6 months, and was in a coma for 6 weeks, according to my mother. I had a scar tissue on the left side of the brain, and the musquito bite trigggered it.
I had brain surgery in 1989 in at the University of Minnesota, and was seizure free for 13 years, 9 of those years with no drugs, but they started up again in 2002, when I was driving down Devon Avenue with my girlfriend Virginia. I lost 2 jobs in Chicago, and was forced to move to California, by my brothers if I wanted disability.

The doctor at Abbott Northwestern hospital asked my mother, "if someone struck her, when she was pregnant with me? She said "no," but my brother John was up there with us and said, "our father came home drunk, struck her, and threw her down the stairs, kicked her in the stomach," but she denied it. She died 3 months after my surgery, and the doctors said, "if I didn't have one then, I'll probley never have one. But like I said before, I had one 13 years later, while driving.
I was also thrown out of a apartment in Chicago for having that one, and the landlady said, I lied to her, telling her, I'm done with those things. I lived in my friends basement, had a few, and he told my sister, he wanted me out of there, because I scared his mother when I had one walking around outside with no clothes on. My brother Jeff got a lawyer who specializes in Disability cases, went infront of the judge, and she ordered me to California, and here I am now, which I really don't like.
Virgina is bugging me to come back, but if I do, one of my seizures meds isn't covered there, so it will be over $300.00 for it. She doesn't want to come here because it is so exspensive for apartments here, and she can't afford it.
Reply to this comment
by October 26, 2009 12:50 AM EDT
I was diagnosed with Tonic Clonic Epilepsy in 1972, my first year of college. They found a drug that controlled my seizures if I was careful, so I've been lucky and had only a few dozen seizures in 37 years. I was able to work whenever the thought of epilepsy didn't scare off employers.

I've been seizure-free for ten years now, but I'm always scared of suffering a breakthrough - where I'll be and if I'll survive. I never got a straight answer as to whether epilepsy could be inherited, so I never had kids. After 37 years there is little change in the landscape, and no end to the crushing side effects of successful treatment.

Thank you for helping inform the public. And thank the Axelrods and the many like them for all the work they do.

Bill
Reply to this comment
by movies66 October 25, 2009 11:07 PM EDT
Thank you for publicizing epilepsy. My 34 yr old son has had epilepsy for 10 yrs - probably as a result of a brain tumor. He can't have surgery because of the tumor. He has been on 7 medications - none of which has worked - in fact - some have made the seizures worse so that he has had 30+ in a month. The doctor took him off medications as he was so drowsy. I begged the doctor for yrs to give him a sleep apnea test for yrs and gave him research that 1/3 of epilepsy patients have sleep apnea. We told him his father had to wear a mask at night and his father eventually died of heart complications and cancer. The doctor ignored my pleas.Last month, Tyler spent two nights at a sleep center and was diagnosed with severe apnea and started wearing a mask at night. He has a lot more energy now and we hope he can exercise and lose weight. Pehaps we can finally increase the dosage and find a medicine to help. He still has seizures and it's mentally disturbing to live not knowing when you will be incapacitated and disoriented afterwards. I fear for his safety every day. My son works 3 jobs and is a productive citizen. We need to draw attention to finding a cure for this insidious disease. Thank you again- do follow up with new research. There has to be more hi-tech ways to stop them.
Reply to this comment
by vigdia October 25, 2009 9:03 PM EDT
My son has been struggling with seizures for 15 years following a traumatic brain injury resulting from a car-bike accident when he was 10. The traumatic injury coupled with the seizures---and the medications to control them---totally changed his life. We have been largely alone in this struggle, as have so many others. I commend CBS for highlighting this debilitating yet very common affliction. Anyone who has lived with this or who has had to stand by helplessly while a family member disappeared into the seizure world knows how desperate we are for alternatives that do not rob victims of their life (i.e. drug side effects) while trying to control the seizures. dlv
Reply to this comment
by Mr_Hollywood77 October 25, 2009 8:11 PM EDT
My lil sister was diagnosed at 14 with epilepsy and it has been rough she has had 2 brain surgeries and having the 3rd this coming Dec. One thing i have learned from this is no matter how tough it feels stay strong and you will get through it ... keep ur head up and fight back stay strong and remember u are not alone there are many willing to talk to u and help u get through it.

Hollywood
Reply to this comment
by mrslinkgetter October 25, 2009 7:13 PM EDT
Thank you for bringing epilepsy awareness to prime time! My son has struggled with epilepsy for 11 years. He has dealt with bullying, misdiagnosis, being left off medication, and doctor who did not believe he had epilepsy until they re-proved he had it all along. (it took 6.5 years for them to prove the abnormalities they saw were indeed the epilepsy he was originally diagnosed with). He now has severe depression along with epilepsy. I was diagnosed with epilepsy in 2006. 200,000 people are diagnosed with epilepsy annually.

It is time for the stigma of epilepsy to be stopped. Your show is an assistance in helping this.

People with epilepsy need a voice in prime time and we thank you for providing this!

GM
Reply to this comment
by Ep_GirL October 23, 2009 10:13 PM EDT
Thank you

I found out I had epilepsy at the age of 17. It not only destroyed me pysically but also mentally. I ended up losing my boyfriend, my job & my social life. It does cause alot depression, but I'm trying to battle on.
Reply to this comment
  • Preview: Congo Gold Preview: Congo Gold

    0:35 November 25, 2009

  • Preview: Bob Ballard Preview: Bob Ballard

    1:49 November 25, 2009

  • Rooney on Thanksgiving Rooney on Thanksgiving

    2:16 November 22, 2009

  • 60 Minutes, 11.22.09 60 Minutes, 11.22.09

    43:21 November 22, 2009

  • James Cameron's Avatar James Cameron's Avatar

    12:43 November 22, 2009

  • Maziar Bahari: Witness Maziar Bahari: Witness

    11:53 November 22, 2009