Rasmussen’s Encephalitis and my life

In my early teens I was diagnosed with Epilepsy. This sudden diagnosis changed me physically and mentally. The pills I had to take stopped my seizures but they made me lethargic  and obese, and feeling mentally slow. At least I had a community to help me get through high school and my adolescence. The Epileptic community was accepting and it gave me comfort to discuss my situation with people going through the same thing

My condition is no longer epilepsy, until now I have lacked a community.In my twenties I was diagnosed with the disease Rasmussen’s Encephalitis, following brain surgery. RE is an extremely rare degenerative disease that causes seizures,hemiparesis and some cognitive impairment. Adult onset RE is more rare than pediatric RE. Pediatric and adult onset RE have very different treatments. The most ”common,” procedure used to treat RE is hemishperecetomy. As an adult I was not a candidate for this surgery as the damage to the adult brain was to great. So, I pursued alternative treatment methods.

I Began receiving IVIG therapy approximately 9 years ago it has made a huge difference in my overall condition. When I began IVIG I was having seizures 10-20 times (petit mal), and I was unable to speak during them and I had constant tingling/burning along my left forearm. Today  I have seizures 1-3 times per day on a bad, high stress day and I have some tingling in my left hand. IVIG has been great for me, I continue to research the newest medical advances and studies. RE is a dangerous disease that we know far too little about and I want to be informed about any research into it.

I have been unable to find a support community for adults with Rasmussen’s Encephalitis, but there are groups for children and parents of children with RE. I don’t really belong to either of those groups. After my diagnosis of RE I was no longer considered epileptic by the community that had been my support system for years. At an appointment with one of my specialists I was told that they’re were only aware of about forty adult-onset cases of RE currently known to her.

I have been a person with a neurological condition since I was a teenager. After my surgery and second diagnosis I discovered that my seizures were not “simple” idiopathic epileptic seizures, they were the result of a much larger underlying disease.The disabled community is also another exclusive one that I don’t quite belong to. I have a disability that is not obvious externally 80% of the time. RE is characterized by “seizure clusters’” that will continue until that part of the brain is scarred. I  most often have petit mal seizures that last anywhere from 10 seconds to 1 minute, occasionally I have a larger seizure that require Ativan. I don’t have them every day so I seem “normal most of the time. When I do have RE related seizures they are either brief and inconvenient or they are debilitating,exhausting and painful. Because people only see me when I have the smaller seizures they assume that I am actually perfectly fine. 

This blog is for everyone who wants to know about Rasmussen’s Encephalitis. The content of this blog will be primarily for RE parents, advocates and individuals with RE. I will be welcoming guest posts in the near future. If you have questions feel free to ask 🙂