your story looks like a photocopy of mine. I am 31 years old and I live in Val di Fassa (TN).
I got sick at the age of 6 starting to walk on toes and always falling. My disease was initially diagnosed as myositis and then had a name: limb-girdle muscular dystrophy.
Like you, I fought with all my might not to sit forever. The willpower, however, was not enough and from the age of 15 me and "my spider" are inseparable. Not being able to help but sit up, I let off steam on the books. I went to accountancy and then I enrolled in university. I have a degree in literature and I do private tutoring.
Dear Emanuela, not only do I have the same disease as you but we also have the same doctors: Angelini, Melacini. Very good doctors even if the fewer doctors I see and then better I am.
There is no cure for this disease, we only have the strength to fight trying to accept this "ugly beast".
I really want to meet you because as they say "common sickness means joy". Sharing the same experience I think is a positive thing.
I hope to hear from you soon!
p.s. Thank you too for the creation of this website.