I wasn't diagnosed with epilepsy until my mid twenties. I had lived with the symptoms since I was about 9 yrs old. I am happy to say that after being tested, I could finally find comfort in treatment, and live a normal life, without any limitations.
I find it particularly important to share my story in hopes that someone who may be afflicted with pain and symptoms that are difficult to deal with, will be able to learn about epilepsy, and find and receive treatment.
I joined the EPGP project because I believe that the medical community can help us understand the source of our condition and also that research will bring awareness to those who need it.
In my case, it wasn't until my younger brother had a series of grand-mal seizures that I learned about my own condition and was able to get the relief I needed.
As genetics played a critical role in my case, I find the EPGP a critical part of experience, past and future.
- Joanna, San Francisco
Epilepsy has devastated our family. Our son is developmentally delayed due to seizures. He requires full assistance for every aspect of his life. All the dreams and hopes that we had for Patrick are gone. He isn’t going to play baseball, get a driver’s license, graduate from high school, marry, or be a taxpayer. We live hour by hour protecting him and keeping him safe.
We do not know the cause of Patrick’s seizures. This is one of the reasons that we participated in the Epilepsy Phenome/Genome Project. If participating in the study helps the researchers in finding the cause, then they can work on a cure. That is the problem with epilepsy. The symptoms are treated, not the cause.
Participating in EPGP was very easy. It was two parts. First was a phone interview, then a simple blood draw from Patrick and us (mom and dad). Very quick and efficient.
- Wendt family, California