Diagnosis: MOG Antibody Disease
California, United States
A story about fighting a mystery illness and adapting to blindness.
My name is Andrea and I have been officially diagnosed with MOG antibody disease since 2013. I don’t think that much was known about the disease back then. The first two years were especially hard as I lost the majority of my sight in both eyes during that time. I am writing my story to hopefully help others that are becoming or are blind.
My first relapse occurred on October 1, 2011. I had a very severe optic neuritis relapse. It completely blinded my left eye and I never regained any site back in that eye. Within a few weeks, it struck my right eye also blinding it completely. I was fortunately able to regain sight back in that eye. However, because the relapses were not under control, I ended up losing the majority of sight in my eye. I was initially diagnosed with CRION.
In 2013, my neurologist suggested that I get the MOG antibody test, and that came back positive. I was then diagnosed with MOGAD.
I remember walking out of my neuro-opthalmologist’s office just feeling lost. I dreaded going into his office knowing that I was not going to have a good report. I went through a lot of relapses at this point and remember not being able to read anything on the eye chart. Everything was black in my left eye and very blurry in my right eye. I could not see all of the colors in the book he used either. I must have scared my doctor and nurse because I was crying so hard, and they didn’t know how to respond. It felt like no one understood what I was going through. I remember going through the different stages of loss. I stayed in the anger stage for quite a while. I had lost quite a lot of significant items at this time. It started out with my ability to drive, my health as I used to know it, my independence, career and friends. It felt like I had fallen down a rabbit hole into some mysterious world. I could not make out faces anymore. I was having trouble doing some of the things I have been doing all of my life. I felt my independence slipping away.
I have always been a problem-solver, so I decided to see my therapist to let her know what I was going through. I told her that I was given my report, but there was no advice on how to adapt. She then gave me some resource information. I am not ashamed to say how valuable those therapy sessions were. I was battling this disease to keep what little sight that I had left. When I received my diagnosis, there was hardly any information on it and no Facebook support groups at the time.
I have compiled a list of resources for the blind, from my experience, which you can read here.
I am determined to keep on spreading awareness and advocating for MOGAD and hope to put it on the map. I hope that more people learn about the disease as well as find a cure in the near future.
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