The story of Markus
My disease was diagnosed when I was 9 years old after years of researching by my parents for the right physician who could diagnose it. Summarized almost every joint in my body is deformed in a more or less way. At the moment – as an adult – my severest problem is my “missing” hip joint on each side, the deformed lumbar spine as well as the joints in my hands. My muscles have to balance out what my skeleton cannot bear and this leads to stiffening within the muscles which can be very painful. Real problems which limited my daily life occurred in my youth where – thanking with all my heart – I met a physiotherapist which has exceptional capabilities and knowledge of the human body and how your body can overcome many problems by strict, routined and hard physical work: three-dimensional mobility training, strengthening muscles, preserving bones and joints.
At the age of 16 I was predicted to be completely be in a wheelchair. This was the turning point for me to excel even more to not let that happen. Hard times in high school was to face the architectural barriers as well as the understanding barriers by the school officials as I couldn’t walk well enough especially climbing up the stairs. With 18 I underwent a carpal tunnel syndrome surgery which weight heavy on me as I recovered just slowly and for most of the time I needed my hands to support my walking (holding rails, getting up) and as I’m artistically blessed I needed my hands for my hobby to draw and write. With exercising and starting with strength training I gained and maintained a quite secure walk. At the start of my time at the university I had a rollator and already during my mid-semesters I was able to stand and walk all on my own again. I finished the university with a diploma as an industrial designer with the topic for universal design, a caravan which can be used by many different people independent by their degree of mobility. Having a handicap had mostly just minor restrictions to find a job, being thankful to technology I can avoid physical work as much as possible, yet I decided a few years ago to become a self-employed designer.
Now at the age of 34 I still don’t need a wheelchair for my everyday routine, meeting friends and family or visiting customers yet I need it for long travels such as visiting a city. I cannot walk long distances yet I can ride my bicycle very well which keeps me motivated and mobile. I can drive a car without any problems and I also can dance for a short time. I learned to divide my day and physical workload in the way as an image of a battery where I can calculate and plan my power for the day. The receipt for me though is to always find a way to balance in between moving and resting in order to live with as less pain as possible: doing too much is painful and doing not enough will result in long-term problems.
My conclusion is to focus on finding the best physiotherapist you can get, eat as healthy as possible (I still enjoy eating rather unhealthy sometimes), avoid gaining weight in order to preserve your skeleton, keep on moving, learn your limits of what you can do and don’t. So far I don’t need any medication! What I do regularly is drinking green tea with ginger.
Last but not least I had the largest luck of all to have parents that support me during all the phases in life that matter, especially to be able on focussing on my work-life.
If I can maintain my status I’m really a happy person despite all difficulties. Yet I never met someone with the same/similar disease. This is why I am extremely grateful, being introduced to this site by an amazing person! If anybody feels the joy for a conversation you are welcome – whether for questions about me, my rare disease, me helping others or for giving me valuable advice.