From Walk My Life to Drive My Life
My name is Saskia. I am 36 years old and I’m from Germany. Until I was about seventeen and a half years old, I lived a normal life without knowing what else was going to happen to me. My family noticed that I somehow walked differently. A few weeks later, I also realized it. For the next three years many doctors searched for a cause and, while some did not find anything wrong with me, a few misdiagnosed me. My walking was getting worse and very exhausting for me. Often I was asked if I had something wrong with my knees, which I found very unpleasant because I did not know myself what was going on.
One day I stood in front of the stairs with my shopping bags in both hands and could not walk up. At that moment I was completely desperate. Suddenly, I realized that in order to get up the staircase, I would need to pull myself up using my arms. I have encountered many such situations ever since. At that time I felt very alone with my complaints and problems.
At the end of 2002 I tried to get help again from an orthopedist. This was a successful meeting as I heard the words “muscle disease” for the first time. After several visits to the doctor and hospitalizations, I was transferred to a muscle center. At this time, I had a muscle biopsy and a genetic examination. I was diagnosed with Hereditary Inclusion Body Myopathy (HIBM, now known as GNE Myopathy (GNEM)). I was diagnosed only three years after my symptoms started. I later learned that was quite a fast time to receive a diagnosis for a rare disease.
I felt alone with GNEM and wondered why it had to hit me and how my life should go on. My mum helped me to find something positive. At some point, I also noticed weakness in my hands and fingers. I could barely open bottles. Then came my first rehabilitation session. Here I realized that I am not alone! There are so many muscle diseases with similar complaints and problems with everyday life. Finally, I was able to exchange ideas, feel understood and find some relief for my difficulties in my day-to-day life. I got a manual wheelchair and many more aids over the years. With this help I could win back a lot of quality of my life. As my disease progressed, I noticed that I needed more help during the day and night. That is why I have been receiving assistance from caregivers since mid 2014 twenty-four hours per day. Someone has to be present to help me with everything.
“Whoever does not fight has already lost” has become my motto. I do not fight against GNEM, but for a happy life with a lot of fun. Life has taught me so much. GNEM has made me the person I am today. I have met a lot of great people, had experiences, and found new hobbies that I do not want to miss. Who knows if I would have become such a positive person without GNEM? I can appreciate the little, beautiful things that happen every day.
I hold honorary posts in various clubs in which I am committed to making sure that people with disabilities get the mobility support and personal assistance they need. Because of my unique experience, I can help many friends and acquaintances. I am also committed to working with and helping delinquent young people, as I think they are the generation of tomorrow.
Recently I created my own YouTube channel to promote GNEM and encourage and educate people about the disease. Here you also get to see what you can do with a wheelchair and the limitations that come with it, such as traveling through the jungle! Read Saskia's story in German, here.