Sharon Volker is 60 years old and has SCA1. It took some time before she received the right diagnosis. Every doctor and nurse she ever met never heard of SCA before. Sharon has always been very close with her daughters. In her daily life, loves to spend time at the beach and going out for a decaf coffee.
My name is Sharon Volker and I am 60 years old. My daughters were my life, I did everything with them. We mainly went to the beach after we finished at school with all their activities and my daughters did everything possible: swimming, hockey, running, dancing, and many other things.
Apart from my sore legs I used to clean our big swimming pool daily, all of a sudden my energy became a problem, I became tired. I was a Claims Administrator for many years and my work became concerned my writing, speech, and walking became a problem. They fired me due to ill health. In this country, they were allowed to do that. I was 57 at the time.
In my early 40’s I started with pains in my legs and after seeing many doctors I was put in the hospital and incorrectly diagnosed. They put me on a lot of medication which helped the pain in my legs. A professor picked up on the MRI that was done at the time that my brain was shrinking. This was done at a government hospital. I also had blood tests which were lost.
I also was a case study for the hospital. The hospital asked me to see a private neurologist. About 5 years ago, the pain in my legs started again and my eyelids started closing. I was put in the hospital for 2 weeks, during which they did every test possible. Eventually, they did a blood test and it picked up I had SCA1. They inserted botox around my eyes to stop them from closing. The neurologist I was seeing said that this country did not have the resources to do any research on this illness.
My life was my beautiful. I did everything with my daughters, the weekend was theirs. In the last couple of years I fought the fight I have had a major heart attack, I was on medication for 6 months. I have been in and out of hospital with a sore tummy. My favorite outing is to go out and have decaf coffee and to go to the beachfront.
All the times I was in the hospital, the matron, nurse, sisters, and all types of doctors had never had a patient with SCA. I told them to google SCA. The laboratories here in South Africa should be updated about this disease. Hopefully, by the time my daughters get this disease, there is a cure. Both of my daughters eat properly, exercise, and take vitamins.
Thank you Sharon Volkor for sharing your story. Let’s hope that the continuous journey of spreading of awareness for ataxia means that more research will be dedicated to finding a cure!
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