One of the reasons I have been undiagnosed for years is the low prevalence of Narcolepsy in Israel- It is estimated that in Israel there are six people with type 1 Narcolepsy.
When I was finally diagnosed, I did not know a single person with the same problem, so the Facebook groups were my address.
A year ago, I flew to Berlin with my husband, where I met, thanks to the Internet, two lovely people with Narcolepsy. We were four people- Me, my husband, an Arabian nice lady and a nice man who speaks only German. Sounds like the starting of a joke? We had such a great time together and even now we still keep in touch. I won’t forget the excitement I felt and how much we have in common!
I learned that Nuvigil is “Vigil” in Germany and that Rolf is symptom-free for almost 10 years, thanks to Xyrem. Wow. I thought to myself. It is a magic drug?!
I also met a young lady from Norway who travels to Israel sometimes, we keep in touch and I’ll meet her in August.
Back to Xyrem-I read about this treatment and after a few months, I even got a prescription!
I am the second person in Israel who received the drug. I’m the first patient on Xyrem for my doctor. So I had to look for answers and others experiences from…Facebook.
A month ago, a cute girl from the Xyrem Support Group sent me a message, that she and her boyfriend would be visiting Israel soon. On the last day of their trip, we met.
I have to say people with Narcolepsy are special and kind (:
An Israeli woman with her poor husband, one American lady with a very nice man who was born in Ukraine, meet. Time passed quickly and we all have such a great time together! After three difficult months with Xyrem, it is so important to hear, face to face, someone who would say to me, “It was even harder for me and I’m glad I did not give up”. To know that the miracle drug may be a miracle (and maybe not) but it will not happen soon and I should, “take the time”.
I will continue to meet more and more N friends around the world, for me it is very important and completes the beautiful virtual support that I get thanks to Facebook.