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If I was asked to take part in a clinical trial, I’m not sure what I’d say…
First there’s the fear factor. Would I be a guinea pig for something dangerous? Would they take away my meds? Would it hurt me? Would it change something in me?
I asked those very questions to Patient Advocate David Albaugh at Team Epilepsy. http://www.teamepilepsy.org/
He patiently explained that before any clinical trials can begin, the med goes through rigorous testing and must be accepted as viable by the FDA. I’d be able to keep taking my regular AEDs (Whew!) and I’d be monitored very carefully by medical specialists, every step of the way.
That made me feel more secure. Because with every visit, both my health and seizure status would be checked and closely followed. So, if there were any negative effects, the specialists would know immediately. And if there was any danger, my testing would be stopped, right then and there.
Then I got curious. What exactly happens in a Clinical Trial?
David Albaugh explained that it’s really quite simple. Some people are given the actual pill. Others are given a placebo (with an inactive substance in it). Neither the patients, nor the medical team know who has what. (Blind study) Which makes it kind of mysterious and exciting. (It’s like trying to cheat on the written part of your driver’s test. You can’t, because the person beside you has a different test! I learned that the hard way!)
Then I got hopeful. I could learn more about my seizures. I could possibility control them. All it took was trying this new adjunct drug along with my regular meds.
So, I wondered: Could this be the answer? Could this finally be my “magical med” mix?
I have to tell you, I kissed a lot of frogs before I found my answer. From Dilantin (which made me a zombie) to Pheno (which made me a double zombie) and dozens of others over the years.
And like me, you know that finding the right combo of AEDs is a crap shoot. (That’s why they call them “Clinical Trials!”) The prospective med has to be thoroughly tried and tested before it can become available.
But I couldn’t stop thinking: What if this really did work? Then I let my imagination go a little wild and thought, what if this could lead to more freedom? (Bye-bye helmets, bye-bye cane! Yeeee Haaaa!)
More importantly, I wondered, What if this new discovery could help control not only my seizures but also other people like us?
We all know that nobody wants epilepsy to rule their life. And nobody should have to. That’s why this Team Epilepsy project gives me such hope.
There’s this wonderful saying: “When the world says Give up, Hope whispers: Try it one more time.” Sounds like good advice to me…
NOTE: Text taken from an interview with David Albaugh, Director of Patient Advocacy, Team Epilepsy (http://www.teamepilepsy.org/)
First there’s the fear factor. Would I be a guinea pig for something dangerous? Would they take away my meds? Would it hurt me? Would it change something in me?
I asked those very questions to Patient Advocate David Albaugh at Team Epilepsy. http://www.teamepilepsy.org/
He patiently explained that before any clinical trials can begin, the med goes through rigorous testing and must be accepted as viable by the FDA. I’d be able to keep taking my regular AEDs (Whew!) and I’d be monitored very carefully by medical specialists, every step of the way.
That made me feel more secure. Because with every visit, both my health and seizure status would be checked and closely followed. So, if there were any negative effects, the specialists would know immediately. And if there was any danger, my testing would be stopped, right then and there.
Then I got curious. What exactly happens in a Clinical Trial?
David Albaugh explained that it’s really quite simple. Some people are given the actual pill. Others are given a placebo (with an inactive substance in it). Neither the patients, nor the medical team know who has what. (Blind study) Which makes it kind of mysterious and exciting. (It’s like trying to cheat on the written part of your driver’s test. You can’t, because the person beside you has a different test! I learned that the hard way!)
Then I got hopeful. I could learn more about my seizures. I could possibility control them. All it took was trying this new adjunct drug along with my regular meds.
So, I wondered: Could this be the answer? Could this finally be my “magical med” mix?
I have to tell you, I kissed a lot of frogs before I found my answer. From Dilantin (which made me a zombie) to Pheno (which made me a double zombie) and dozens of others over the years.
And like me, you know that finding the right combo of AEDs is a crap shoot. (That’s why they call them “Clinical Trials!”) The prospective med has to be thoroughly tried and tested before it can become available.
But I couldn’t stop thinking: What if this really did work? Then I let my imagination go a little wild and thought, what if this could lead to more freedom? (Bye-bye helmets, bye-bye cane! Yeeee Haaaa!)
More importantly, I wondered, What if this new discovery could help control not only my seizures but also other people like us?
We all know that nobody wants epilepsy to rule their life. And nobody should have to. That’s why this Team Epilepsy project gives me such hope.
There’s this wonderful saying: “When the world says Give up, Hope whispers: Try it one more time.” Sounds like good advice to me…
NOTE: Text taken from an interview with David Albaugh, Director of Patient Advocacy, Team Epilepsy (http://www.teamepilepsy.org/)