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I’ve read Hope Gordon’s story today in the Daily Mail (see link below) regarding ignoring doctors’ advice and raising £10,000 herself to have an amputation for her CRPS. I just wanted to wish Hope all the very best of luck for the future now she has had the above knee amputation. I really hope that her pain free days continue and she is able to get training on a prosthetic leg as soon as possible, to allow her to carry on with living life!
Unfortunately it’s a bit of a Postcode Lottery for amputations for CRPS, in that some Hospital Trusts in the UK are allowing amputations for reasons of pain from CRPS and others are staying close to the rules of amputations.
I’m pleased to read that Hope’s CRPS remains in remission and she does remain pain free. However this doesn’t happen in all cases of CRPS amputations. Not everyone can get onto prosthetics after having an amputation due to CRPS. There is a risk of the CRPS spreading to the remaining stump and other limbs as well as the risk of having phantom limb pain as well.
We believe that the NHS need to do more before a CRPS sufferer gets to the stage of needing an amputation. More research needs to be done in terms of finding a test, also getting a quicker diagnosis by spreading awareness of the condition and eventually a cure. At present there is no support whatsoever for CRPS sufferers in the UK that is provided by the NHS, this is why I started Burning Nights.
Despite CRPS sufferers having to live in constant pain 24 hours a day, you can on,y be seen by a Specialist at an Outpatients appointment normally in a Pain Clinic, which you sometimes have to wait over 6 months for.
However we as a charity wish Hope Gordon and other CRPS amputees the very best of luck and we hope that you all become pain free and get a prosthetic to help you start to live your lives.
Victoria & the Burning Nights team x
Registered Charity No. 1166522
Registered Address: 1 Alder Brook, Chinley, High Peak, Derbyshire SK23 6DN
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