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UK Dupuytren's charity
Jun. 23rd, 2011 03:32 pmMany of you will know someone with one or more bent fingers. It's a condition that a lot of older people suffer from. In most cases, the bent fingers are caused by a condition called Dupuytren's Contracture.
In most cases, probably the majority, people don't realise early on what they have, and in many cases don't seek treatment until the finger is really badly bent and they're unable to use it. It develops slowly and I suspect many think it an inevitable condition of old age.
I've been asked if I'll help set up a charity to promote research and better knowledge of the most effective existing treatments. The UK is still pretty much in the Dark Ages when it comes to Dupuytren's. Both Germany and France are way ahead of us. (Germany had radiotherapy 25 years ago and France has a big lead in breaking cords with the aid of needles rather than surgery - known as 'NA')
Does anyone have any experience of setting up a charity? Are there problems/pitfalls I should look out for?
I don't want to get too heavily involved until the tennis elbow clears up, but I do believe that this is a medical condition that has better (and more cost-effective options) than are currently available in most of this country.
In most cases, probably the majority, people don't realise early on what they have, and in many cases don't seek treatment until the finger is really badly bent and they're unable to use it. It develops slowly and I suspect many think it an inevitable condition of old age.
I've been asked if I'll help set up a charity to promote research and better knowledge of the most effective existing treatments. The UK is still pretty much in the Dark Ages when it comes to Dupuytren's. Both Germany and France are way ahead of us. (Germany had radiotherapy 25 years ago and France has a big lead in breaking cords with the aid of needles rather than surgery - known as 'NA')
Does anyone have any experience of setting up a charity? Are there problems/pitfalls I should look out for?
I don't want to get too heavily involved until the tennis elbow clears up, but I do believe that this is a medical condition that has better (and more cost-effective options) than are currently available in most of this country.
