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Staffan R.

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1 reviews

Review for Multiple System Atrophy Coalition, Charlotte, NC, USA

Rating: 5 stars  

My name is Staffan Rundberg. I’m 53 years old and and I live in Stockholm, Sweden.
I was diagnosed with MSA-C in February 2018, which was a shock of course, since this disease is so rare and devastating.

My first symptoms were lack of balance and problems with hitting the right keys on my computer as well as a general feeling of something just not feeling right. I also had problems with coordination and slurred speech. I knew there was something wrong, but people around me didn’t really believe me.

After meeting several doctors, I finally met a specialist in neurology. He admitted me to the hospital for a few weeks, and initiated a series of tests. It took a year to get a diagnosis - multiple system atrophy, the cerebellar type.

Today I’m in my fifth year of the disease. Presently I use a wheelchair most of the time, and my speech has progressively gotten worse. Despite this, I try to live a ”normal” life. I have had to stop working, unfortunately. Becoming disabled in mid-life has been, and is, a whirlwind, but I try to accept what is happening to me. I’ve come to understand that acceptance is a big part of moving forward.

After getting the diagnosis MSA-C, I felt a big need to reach out and talk to and meet others affected by this disease. I found the MSA Coalition, among others. This is an international coalition, with the aim of finding a cure for MSA. I have gotten to know people from all over the world through the MSA Coalition.

They provide knowledge and arrange a yearly patient and family conference and I participated in the most recent one held in San Francisco in the fall of 2018. I look forward to participate in upcoming conferences if I have the strength and possibility of doing so.

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