Familial Desminopathy |
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Desmin myopathy is a disorder characterized by accumulation of desmin in the muscle cells. It can be dominantly inherited or occur spontaneously, its effects can range from mild to severe. It is extremely rare. The rarity of this condition is my reason for setting up the web site. Myself and two other members of my family have Familial Desminopathy and I would like to contact others others who have the same condition. If you have or know someone who has this condition and would like to e-mail me please do. I have have no special medical knowledge so can't offer advice. My aim at the moment is to build up a contact list for exchanging information and support.
Links http://uk.groups.yahoo.com/group/desminmyopathy/ I have recently set this message board up, please join to post a message. NORD an American site with a good database, I am a member so if I receive any info relating to DSM I will post it on the message board. http://www.disease-resources.com/ a site with information on rare diseases. Contact a Family Every day over 75 children in the UK are born or diagnosed with a serious disability or rare syndrome and the vast majority of them are cared for at home. Contact a Family is the only UK charity providing support and advice to parents whatever the medical condition of their child. European Organisation for Rare Diseases modeled on the American organisation NORD. John Hopkins University A medical site it catalogues a few types of DSM and describes family histories.
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