Discussions By Condition: Rare Disases


Posted In: Rare Disases 0 Replies
  • Posted By: distoweb
  • January 12, 2009
  • 07:33 PM

Hi friends of this great forum.

I come to this support group to collaborate as much as I can after having done the same (I could say ‘successfully’) in similar groups in many countries along the world for a year.

I must say I started to live with torsion generalized dystonia (a rare movement disorder that causes pain, cramps, lack of skill, etc., and many difficulties in daily life) when I was about 11. Now I am 43 and now I know my disease is due to a gene mutation across DYT1 or torsin gene. Some months ago I felt I could help other people with my personal experience, my way of facing this illness now and in the past, and so on.

So here I am trying to share the keys of my experience, what I call ‘a positive approach to dystonia’ but also to… any other chronic, incurable, or similar disorder.

I use to say that, of course, I am not a model of anything, and I also say I trust those people who help you with an extra bit of understading, something so really expensive to get these days. ‘Understanding’: in my opinion, the best medicine to deal with.

In a simple way, and absolutely far from any interest but showing my own experience, I have spent long time months designing and developing a webspace from which I try to help sharing very carefully the best of me in a practical way and considerating not only physical aspects but animics too. You can also access to free pro physiotherapy advice.

The url:


Please, this is as yours as mine. Do not doubt doing with it whatever you feel it can be useful to other people, specially to ill people close to depression. I feel it can help.

My best wishes,


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