Discussions By Condition: Rare Disases

Dystoniia

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:

http://webs.ono.com/distoweb

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,

Fernando
Valencia-Spain

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