Doing research online trying to find some doctors that might be interested in helping our Mollaret’s Meningitis support group get more research into our illness, I found Global Genes, www.globalgenes.org.
Through their recommendations I was able to get in contact with a couple of doctors. One was in the south and basically said there really isn’t any research funds out there to look into our illness right now. The other, Dr. Levin at UC Denver, had a conversation with me on the phone. He was involved in the initial determination that Mollaret’s was caused by the herpes simplex virus. He was interested to hear about how large our group was and that we were actively looking for someone to help us. We have a survey that our members can take and it has some very interesting information. You can see the results here.
He has contacted me and said that if he believes there is a chance we can add some information to the research already out there, then he will talk to some of our members to see if there is more we can research to add to the data already out there. It sounds very hopeful.
I am pretty excited about working with Global Genes because they are going to help us organize as a group to help us get out there and possibly get more research attention.
Please share the story with all your family and friends on social media to help us get the word out about this rare disease.
Have you heard of Mollaret’s Meningitis? Neither had I until April 2016 when I got the official name of my rare form of viral meningitis originally diagnosed as recurrent viral meningitis. This is a disease we need to know more about, and we need research to get that.
As always, Life’s Hard; Be Kind