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On Easter Monday in 2019, my vision deteriorated and by the end of the week, I was admitted to the hospital. I was feeling sick with almost no vision left in both eyes, experiencing painful eye movements and a sharp pain behind my eyes. I was given a five-day course of steroids by infusion. The colors green and red were switched on and off, just like a traffic light. It was so weird.
The initial thinking was towards multiple sclerosis (MS), which can also start with vision problems. A series of tests showed no evidence for MS. Then what caused my vision problems?
With a high dose of steroids in my system, it was expected that my situation would get better. My world had become dark, blurred and colorless.
Some improvement happened indeed over the first two weeks, but then it stalled and my vision quickly went downhill. I was yet again put on an IV with steroids and my neurologist was determined to find out what was going on. Additional tests were performed, including a search for NMO and MOG antibodies!
Again the same pattern repeated: after some time of improvement, it stalled and went downhill. Another round of infusions, which did not do much to improve the situation. The test results came back and showed MOG antibodies. I was referred to Erasmus MC in Rotterdam, a teaching hospital. Fortunately, this is the expertise center for NMO and MOG in the Netherlands.
Plasmapheresis was the next step in my treatment. It aided my vision somewhat. Immunosuppressants were prescribed and an appointment was made with a center for the blind and people with low vision. Based on the needs of the patient, a plan is set up for both practical and emotional support. They have been very helpful to get some grip on my new situation.
The impact on my life is huge as it is for my loved ones. Everything I did before Easter 2019 is no longer possible. Not being able to read, watch a movie, or work in the garden is extremely frustrating for me. No more working on my creative hobbies or driving my car. It feels like I have been cut off from the world because I miss so much from my surroundings.
My vision is very foggy; color loss makes the world visible in 50 shades of grey with only the color red jumping out. Losing my independence is a very big thing. My family and friends are helping me, but I want to do it myself.
COVID-19 made life more difficult with all restrictions. I was pleased when vaccines became available, however, after three shots, my body has still not produced any antibodies – 0,0 %, so I still have to be very careful. Unfortunately so far, all medications have not been able to keep attacks under control. I remain positive and hopeful that new medications will do their job one day.
The Sumaira Foundation is a source of inspiration to create this awareness and get the word out globally! I am proud to be a TSF Ambassador of the Netherlands alongside my daughter, Saskia. Together, we will raise awareness, connect the community, advocate for patients/caregivers, and perhaps one day, find a cure.