Michele’s Story

I am 48 years old, and I have struggled with epilepsy for 34 years. I lost 1 of my 3 children because of my epilepsy. All 3 were difficult pregnancies in some way. I actually had to go into the ICU after the birth of my first son and did not regain consciousness for 3 days. My daughter died 29 hours after her birth with a congenital heart defect. My last pregnancy was much easier than my first two, and I delivered the baby naturally within 4 hours of going into labor.

I have been to a number of doctors, the Mayo Clinic in Rochester, Dallas, Houston; I’ve had MRI’s, Cat Scans, EEG’s and medicines that caused several trips to the hospital from side-effects; my DNA testing reads Variant of Uncertain Significance for a gene identified PCDH19 not enough information was given.

I have helped a number of others out to help with their seizure problems but I can’t help myself out. I have been a Bookkeeper, Landscaper, a CNA, and a full-time mother. I’m also a grandmother. I was married at 18 years old, and I’m still married to him now.

In the last year, I quit working and driving because of the uncontrolled seizures. I feel judged when I am out in public when if have one, so I quit going out in public even around some of my family. I can’t take vitamin supplements, Over the Counter medicines, or vaccination shots; they interfere with my medicine. I take my AED’s on time, eat no sugar, do not smoke or drink.