Dercums Disease and Rare Disease Foundation UK
We decided to do something for Dercums Disease and the many rare diseases . It came to our attention that many close friends and acquaintances were suffering very similar ailments to Dercum’s Syndrome. This was very shocking, and after some research we have found that many people show symptoms that are very similar to Dercums Disease Syndrome.
Dercums is considered a disease and a syndrome: A syndrome is the association of several clinically recognizable features, which Dercums has.
I have asked many GPs and they have all said the same thing, they do not know what it is that is causing the lipomas, and in turn, the pain. The G.P’s talked a lot but with no real advice, yes they gestured a lot too, but nothing.They said they would look into it, but still nothing.
So we decided to educate the Local GPs so they will be in full control and are able to give a correct diagnosis. This will take time and money, but it MUST be done. Research and education are two of our main goals.
We aim to find more ways of easing the suffering and eventually find a cure for Dercums Disease Syndrome. Many social diseases have found cures. We want one for Dercums. Lots and lots of money has been spent finding cures for many social diseases, this is a good thing, but we need a cure for Dercums and in turn the many rare diseases that are associated with Dercums Disease Syndrome.
Dercums Disease Syndrome has many faces. It hides behind many other symptoms, thus giving a false reading to our local general practitioner. We need to correct this as soon as possible. Educating local GPs is a good start, thus ending the quandary of our GPs and minimising the risk of misdiagnosis that causes the patient to be sent away from the local GP, none the wiser than when they arrived.
No help, no understanding, no pain relief, no hope. This story has been repeated all over the world and this must STOP.
We are asking for YOUR support, and YOUR help to raise money, so we can fund the research with a hope to find a cure. We have the support of some of the leading professors in the diagnosis and research of this debilitating disease, and we want more like them to support and join us. We need to get them all together so we can hold a seminar and lecture tour and to publish an article in the Lancet medical Magazine .
We MUST inform the world that Dercums Disease Syndrome is more prolific and causes more illness due to misdiagnosis.
Please support this very important cause and in turn we can support you.