Published in the June 2019 edition of Germany’s Magazin Barrierefrei, GNEM patient Saskia Melches writes about some of her experiences since being diagnosed with GNE Myopathy.
Find Saskia’s story in its original German or read the English translation below.
Walk My Life to Drive My Life
“At 17 you still have dreams” I thought at that time and lived a normal life. Then I had difficulties walking and climbing stairs. After 3 years of Odyssey with different doctors the diagnosis: Hereditary inclusion body myopathy, now known as GNE-Myopathy. Finally feeling relieved to know what I had and to have had “luck in unluckiness” – it could have been more worse – fear and panic spread over my future. I felt alone and asked myself: “How should my life go on?” At some point I noticed a weakness in my hands and fingers. For example, I was no longer able to open bottles, zippers were very difficult to open, glasses were just heavier to lift up. Then came my 1st Rehabilitation. Here I noticed: I am not alone! There are so many muscle diseases and some complaints and problems in everyday life are the same. Finally I could talk to each other and felt understood.
With various aids, such as bandages, wheelchair, slipping board, etc., I got some quality of life back. The muscle disease is progressive, so that more and more muscles get lost and I am more and more physically handicapped. That’s why I now live with personal assistance. 24 hours someone is there for me and helps me with everything. Getting up, washing, going to the toilet, eating, shopping, household, cooking, in my free time, driving my car and much more are the jobs of my assistants. Nevertheless I live self-determined and independently! “If you don’t fight, you’ve already lost” is my slogan. I do not fight against the disease, but for a happy life and a good quality of life.
I am involved in the organisation “Mobil mit Behinderung e. V.” (Mobility with Disabilities) and I am committed to helping young people who have committed crimes – because they are the generation of “tomorrow”. In order to show what is really possible in life, even with a wheelchair, I have a YouTube channel: “drive my life”, which also talks about taboo issues. In an international network I am networked with other affected people. In 2018 I was certified as patient advocate for Germany for people with hereditary inclusion body myopathy / GNE myopathy.
Recently I took part in an international speaker slam and talked about my dreams. I want to encourage people to inspire them and motivate them to use their time for a purpose.
Further information can be found at www.saskia-melches.com.