1 out of 3 people with Epilepsy are pharmacoresistant, meaning their seizures are not controlled with one or multiple medications.
I have been battling epilepsy for over 10 years. The most difficult part was the constant experimenting of different medications in search of one that might help to control the seizures, and the things that trigger them.
For me, those triggers are loud noises, flashy or bright lights, shaking or vibrating sensations, and stress. Ironically, I work in the live music industry (concerts and festivals) where bright lights and loud sounds are unavoidable. My condition hinders my performance and often prevents me from working.
I have taken dozens of medications at various dosages with no significant improvement to my condition. Many of the medications came with unpleasant and sometimes dangerous side effects.
A few months ago my hospital gave me samples of some medications that were relatively new to the market (Aptiom, Lyrica and Fycompa). When I added them to my existing regimen, the seizures stopped.
For the first time since I was diagnosed I felt like I had control over my life. I was able to work safely and efficiently. I was able to focus on what is important to me such as family, friends and music. I got back some of the things I had missed out on for years.
Unfortunately two of these medications are not covered by my healthcare provider, due to the high prices charged by pharmaceutical companies. The samples I was given ran out and I could not afford to purchase more.
Cases like mine are becoming more common. Rising prescription prices in America are draining the wealth out of middle class families forcing them to cut spending in other areas or to stop taking the medications. (See Consumer Reports)
I am now in the position of having to choose between buying medications for myself, or having a Christmas dinner and presents for my son and family. I have never had a seizure free holiday with my son, Aiden.
Are you looking for a charity that will have an immediate impact? A gift from you will directly purchase the medications Albiom and Fycompa over the holidays. Thank you in advance for your support.
Here is a quick look at the cost of these medications...
Thank you for taking the time to read my story. I encourage you to watch the video posted in the link below and to support the lawmakers who are pushing to regulate prices and hold pharmaceutical companies accountable.
Please share this on Facebook and Twitter so I can reach other compassionate people like yourself.
Click here for video: Bernie Sanders on prescription price gouging.
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- Duncan L
- Charles Poresky
- Pearl Weepers
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