Neuromyelitis Optica (NMO, Devics Disease)

Disease. Devics Disease is an autoimmune illness that affects the optic nerves and the spine. The amount of patients who suffer from Devics varies greatly depending on which source you quote. The Mayo Clinic says that the number of patients is between 800-900. Other sources say there are 1000 while still others say there are no more than 2000 patients worldwide. No matter which source you use, however, the number is still tiny! Devics Disease is considered difficult to diagnose because many of the symptoms are similar to other illnesses such as Multiple Sclerosis and Lupus. Those symptoms include numbness and paralysis of limbs, loss of vision, shut down of the bladder and bowels, hiccups, and vomiting. There are many other symptoms as well. It all depends on how, and which nerves are affected at the time of an attack. Right now, there are no known treatments or cures for Devics Disease that have been approved by the FDA. However, attacks are often treated with steroids such as Prednisone and other medicines are used to help prevent attacks. Because these medicines havent been specifically tested for use with Devics Disease, they are considered off-label uses. Some of these treatments include IVIG and Rituximab. Offlabel uses of medications are often denied by health insurance companies. This leaves many Devics patients fighting for treatment and therefore fighting for their lives. Devics Disease happens to be the illness I have lived with for the last 18 years. It started when I was 21 with an attack that left me paralyzed and hospitalized. I had many, many an attack after that and the quality of my life wasnt so great. I lived in fear every single day of when and where my next attack would strike. I couldnt leave my house without carrying a bottle of Prednisone. Sometimes, I couldnt leave my house at all. Finally, after years and years of unsuccessful medications, my doctor suggested Intravenous Immunoglobulin (IVIG). IVIG has been a miracle for me. I have been able to be a mom and a wife, and not just a patient. I have been able to live my life rather than watch it pass me by. However, I am fighting for coverage with my insurance company because they do not want to pay for an off-label use of my medicine. I just have to convince them that my life is a miracle worth paying for!

~ Becka