My name is Petra and I live in Herzogenaurach. I was born as a twin in 1981 and have a defect in the DNM2 gene.
My twin sister is not affected.
My brother, who is 4 years younger, is also unaffected.
I had Bobath physiotherapy as a child and my problems were blamed on the premature birth.
When I was about 15 years old, my pediatrician suspected a muscle disease and I was diagnosed with centronuclear myopathy after a biopsy at the University Hospital in Erlangen. At the time, I thought I was the only person affected in the whole of Germany.
I found out through the ZusammenStark association that I am not the only person affected. I later requested a gene analysis to find out which gene was affected in my case.
I also have regular physiotherapy, occupational therapy and speech therapy so that I don’t lose any more weight.