Diagnosis: Neuromyelitis Optica Spectrum Disorder
Maryland, United States
My name is Tanisha Alana Willis, and this is the story of my journey with Neuromyelitis Optica Spectrum Disorder (NMOSD).
On October 30th, 2011, I gave birth to a six-pound beautiful little boy. After giving birth, I weighed 195 pounds. Strangely, in November, I started breaking out in rashes around my neck, shoulders and upper back as well as a butterfly-shaped rash across the front of my face. My weight started to drop seemingly for no reason, and by the end of November, I weighed 175 pounds. By the end of December, I had dropped to a shocking 150 pounds.
On New Year’s Eve, I was feeling so bad that I called an ambulance. When the paramedics came, I fainted right in front of them. They took me to the hospital, and I was admitted. On the third night during my stay there, the doctor called me from her home to tell me that she believed that my illness was being caused by my gallbladder. The next day, they ran some tests and it turned out that my gallbladder was, in fact, what was making me so sick, and it was ready to erupt. The doctors came to see me in my room and told me that my gallbladder was almost the size of my stomach. By the time I left the hospital, I weighed 130 pounds and I was still not able to keep food down.
When I left the hospital, I noticed that my right eye seemed a little blurry, and I started getting severe headaches on the right side. I thought maybe it was time for me to get my eyes checked. I got my eyes checked and got a new pair of glasses but noticed it was not working. The left eye also started experiencing the same problems as the right eye. So, I stopped wearing my glasses. Despite this, the headache and the blurriness got worse. I then made an appointment with my doctor. When I saw him, he did a light test on my eyes and noticed that my eyes were not constricting all the way, so he gave me a referral to see an ophthalmologist. As I waited to see the ophthalmologist, my symptoms were getting progressively worse. Finally, I did get to see the ophthalmologist, and when he did some tests, I did not pass all of them so he thought it was necessary for me to see a retinal specialist. I had to go back to my primary care doctor to get a referral, and by this time I was starting to spasm in my legs. My doctor did a balance test and light test, both of which I failed. My eyes were no longer constricting, and I could not walk in a straight line. He gave me a referral to see a retinal specialist. At this point, it was March and I weighed 120 pounds. On March 12th, I went to see the retinal specialist. He did all of the eye tests and told me to go to the waiting room to wait for my results. The results were not good at all. He told me that I needed to hurry up and immediately get to the Washington Hospital Center Eye Clinic. He told me that I was losing my vision and my ability to walk and that I needed to get there right away. So, I went to the Washington Hospital Center Eye Clinic Emergency Room. I was surrounded by doctors. One doctor asked me to stand up. I couldn’t because I could no longer walk, and I could no longer see. I was admitted into the hospital on March 14th. Three doctors came in the room and one doctor told me that I have “Devic’s Disease”. This is another name for what is now called Neuromyelitis Optica Spectrum Disorder, or NMOSD. I tested positive for the AQP-4 antibody.
Three days after, four doctors came into my room and told me that I had systemic lupus erythematosus (lupus). At the end of March, I left the hospital and went to a rehabilitation center in order to learn to walk and see again. While I was at the rehabilitation center, my walking improved but I was still having spasms, and to make matters worse, my kids were at home without me. It was terrible. By the end of April, I left the rehabilitation center with no vision, and I needed to use a wheelchair. The doctors said that I was one of the rare people who get affected in both eyes. After that, my walking did improve, but these diseases were not done with me yet.
In 2015, because of the lupus, I started to have skin pigmentation, and in 2016, hair loss. In 2017, I suffered nerve damage in both ears, causing me to lose some hearing in both ears. In 2018, I started having some really severe spasms and I lost muscle strength, so I couldn’t walk for a week. I had to go to rehabilitation in order to gain the strength to walk again.
Today, I am legally blind, but I can see shapes and I can partially read my phone if I blow up the images using accessibility options. I can now walk, but I have a lot of pain in my back and I must use a walker to walk longer distances. I struggle with the symptoms of NMOSD as well as lupus. One thing I never expected is that I suffer a lot from depression, so I cry a lot. I have a lupus flare about once a year, and I take Rituxan for my NMOSD. I have learned to live with two autoimmune diseases by doing my best to keep well. I changed my eating habits, I do not leave my house without putting on sunscreen lotion, and I rest when I need to.
I often think back to when all of this started and wish that things had been different. I wish that the doctors had picked up on the butterfly-shaped rashes when they first saw them so that early intervention would have been possible. I did not do my part either. I did not go to the hospital right away like I should have. Maybe if I had gotten treatment earlier, I would not have the bad effects of NMOSD. I never want anyone to have this happen to them again. By being a SRNA Support Group Leader, I advocate for both NMOSD and lupus because these two diseases are devastating and can be found together. I have partnered with the MOG Project on two Walk-Run-N-Rolls in the DC Metro Area, and I have plans to collaborate with other groups as well as becoming a spokesperson for the Caribbean. Recently, I have been trying to start my own non-profit organization called “No More Lives”. My hope is that through my advocacy, I can reach many people who might not be able to get early intervention for their disease.
Thank you for taking the time to read my story and hopefully you now have a better understanding of NMOSD, a rare neuroimmune disease that is often mistaken for Multiple Sclerosis (MS), as well as lupus, another devastating condition that often complicates things for NMOSD patients like me.
MEET OUR OTHER HOPE AMBASSADORS