Dear Mrs. Axelrod,
I was touched by your daughter Lauren's stoty and your personal family experience. I was also deeply moved and inspired by all the articles about Epilepsy and seizures and the determination and pasion that families like yours and doctors like Orrin put into the common effort of finding the cure. It was like hearing for the first time the voice of a trapped person coming out of the rubble after several days of search, filled with hope that everybody else would listen and help dig him out. Because of the economical crisis and coincidentally the 'programmed death" of brand name medications, like Keppra, and the replacement of such for generic "equivalents", the "magic bullet" will be no more. The impact of these substitutions is unmeasurable, specially for the patients who responded well to the brand name medication and suddenly began having breakthrough seizures because of it, some even presenting on "status epilepticus". Patients like Lauren that had been seizure free, could begin to have seizures on generic antiepileptic medications and we know that in a large number of cases, once it recurrs, the seizures may be refractory to the usual therapy, often needing more than one drug, and sending everything back to square one, not even taking in consideration that in attempts to save money, the insurance companies would inadvertently increase the global economical burden of disability that these patients will impose with ER visits, hospitalizations, etc. It is once more that the voice of many is needed so somebody can rescue the desperate, specially the ones with no choice, since they don't have money to pay for the brand name and the insurance companies would not approve them, even if doctors spend countless hours trying to obtain authorization instead of spending time seeing patients, some which already waited many months to be seen. I praise Dr. Devinsky and his team for being such a loud voice as well as all the contributors for the Epilepsy edition. I hope we can be heard in congress about this issue, which has the potential to be disastrous.
Rolando Sousa, MD. Pediatric Epileptologist. NY/NJ
Agony, Hope & Resolve
Epilepsy entered our lives more than 25 years ago, and unless things change, I fear that outcomes for families in the future won't be any better than they were for us.
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Twenty-three mind-numbing medications. Brain stimulation. Special diets. Countless hospitalizations, emergency-room visits and procedures. Drug-induced comas to temporarily halt relentless, brain-damaging and life-threatening clusters of seizures. This describes the first 18 years of my daughter's life. One night, when she was just 7 months old, I put Lauren to sleep in her crib. The next morning I found her blue and limp—the result, I was soon to discover, of a night filled with seizures. Seizures that defied explanation, resisted treatments and have defined her life ever since. All I wanted, from that day on, was to be able to make the seizures stop. But that goal remained elusive. She could have 25 or more seizures a day. She would wake up after a seizure just long enough to feel the next one coming on and scream out in terror, begging me, "Mommy … NO … make it stop…" I never could. As all parents know, your child looks to you to explain the world, help put things in order and to make things better. There is nothing worse than seeing that look of terror in your child's eyes when you are completely helpless to make things better. When she was 15, Lauren underwent a seven-hour neurosurgical procedure, which, at the time, was our last hope. Surgeons bored holes in her skull and implanted electrodes directly onto the surface of her brain in an attempt to pinpoint the area responsible for the seizures, in hopes of being able to surgically remove it.
COVER STORY: HEALTH
The toll of epilepsy has been overlooked—and the research underfunded—for too long. A call to action.
When we learned that we had subjected her to this horrific procedure only to come up empty-handed once again, it was the lowest moment of my life. Any remaining hope that we could ever stop the torrents of seizures and the brain damage they were causing dissolved. After 24 hours, my tears gave way to a new resolve. It was no longer OK to sit back and accept that answers could not be found.
Empowered by a few other families, I became an advocate for change, and soon learned that epilepsy, the most common neurological disorder of childhood, was not getting the amount or the type of attention it deserved. The investment in research by the federal government and the investment of private dollars in epilepsy research have simply not been proportional to the burden of this disease. Yes, of course we want to try to control seizures, but that's not enough. Most of those involved in the field were not thinking about a cure. And there was no sense of urgency, no groundswell of support for increased research efforts, even as so many of us sat by helplessly, watching our loved ones deteriorate—sometimes as much from the treatments as the seizures—and even lose their lives. Where were the rallying cries of advocates and patients banding together for a cure that are so common with other devastating diseases and conditions?
This is what compelled us to come together and found CURE, Citizens United for Research in Epilepsy. As parents and patients, together with the scientific community, we are raising money, spearheading the search for a cure and supporting the critical, cutting-edge research needed to unravel the mysteries of this disorder.
When Lauren was 18, a new drug, Keppra, was approved. It turned out to be her magic bullet. She continues to take three daily medications and, miraculously, has been seizure-free for the past nine years. Despite the irreversible damage to her brain, we see steady improvement in her cognitive skills and her ability to function independently. No longer haunted by recurrent seizures, she is able to live life fully and it is a true joy to witness.
I don't allow myself to look back and wonder "what if." But when I receive calls from parents of newly diagnosed children who are beginning to travel the same path—for whom available treatments are failing, for whom seizures are so destructive—I can't help but relive it. Epilepsy entered our lives more than 25 years ago and yet, far too often, I have no confidence that outcomes today will be any better than they were for Lauren. That is unacceptable.
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