My name is Dionne Cooper and I am a single mother of two awesome sons, David (19) and Darius (14). I am a hairstylist and a Certified Nursing Assistant. I also have Neuromyelitis Optica (NMO), also known as Devic’s disease. I was 38 years old when I was first told that I had this rare illness, and I remember the first time I had an attack like it was yesterday.
In March 2009, I woke up with such a sharp pain in my left eye — like someone had mistakenly hit me in the eye with a finger. Then I noticed I couldn’t see, so I rushed to the bathroom to wash it out because I thought maybe a cold may have set in my eyes. I was so scared! I called my sister, who works at the hospital, and she told me to get to the ER. I went to the hospital, where the doctors told me I had ON (optic neuritis) and that my nerves were inflamed. They told me they would have to hold me in the hospital for several days to give me steroids through an IV.
Doctors had no clue what was happening. They did a lot of lab work, testing me for everything. A few days later, I was discharged. Six weeks later, in May 2009, I lost my vision again in the left eye, so I went back to the ER, where they gave me steroids again.
In August 2009, I was rushed back to the hospital because I had lost my vision again and was losing the feeling from my waist down to just above my knees. I had even lost control of my bladder and bowels. I thought, “Lord, please, what is going on with me?” I wouldn’t cry, but I prayed. I was so scared to see my son’s face, to have him think I was going to die. All I could do was think, pray, and ask for help.
One doctor, who remembered me from the first time I came into the ER, asked me how old I was and what my name was. I told him, but I didn’t want to be a bother to anyone. I just wanted a helpful and supportive doctor who cared and was willing to find out what was wrong with my body. I started crying. He held my hand and said, “That is why I am here.”
But had I ever heard of NMO? Devic’s? No, what’s that?! After being tested and waiting for the results, I was told I had NMO: a rare disease that has no cure. Lord, my heart just dropped. Now, I am taking an immunosuppressive drug (azathioprine), to prevent subsequent attacks, and a low dose of steroids. I sometimes have pain, stiffness and muscle spasms, but I am taking the appropriate medications to manage them.
Neuromyelitis Optica (NMO) is an uncommon disease syndrome of the central nervous system (CNS) that affects the optic nerves and spinal cord. There is no cure, but there are therapies to treat an attack while it is happening, to reduce symptoms and to prevent relapses.
Today, I am living life as it comes, day by day. Although I lost the vision in my left eye, my doctors are amazed that I can see shadows. I tell them all the time it is the work of God, and that is why I always say I am BLESSED. God can hold me down; God is awesome. My sons and I always say, “No More NMO!” But I try not to think about it. I try not to stress about anything because I know God has me.