"Hit a dead end"
About: Crosshouse Hospital / General Surgery Crosshouse Hospital General Surgery KA2 0BE
Posted by Penny123 (as ),
I have a close relative that suffers from a rare disorder called Dercum’s Disease that very few health professionals know about it is often diagnosed as Fibromyalgia.
There is no known cure or treatment for this condition and only one specialist in the world researching it. Her GP who had no knowledge about Dercum’s but has been learning along with my relative about the condition and is very helpful and pro-active.
This disease is very painful it’s symptoms include painful areas of fat that are not effected by diet and exercise and painful fatty tumours called lipomas. She was referred to a surgeon who again had no knowledge about the condition but spent time studying it and has offered to remove some of the more painful lumps if she wishes, as they can sometimes grow back.
She has also been to the Lymphedema clinic and they are keeping in contact with her to see if they can help at some point.
The care she has received from Ayrshire and Arran has been great but with very little know about the illness, she feels she has hit a dead end. She feels very alone and afraid.
As Dercum’s Disease covers a lot of medical disciplines she does not know who to go to next. This illness is progressive and her mobility has declined rapidly in the last six months. It would be great if she was able to connect with health professionals or other suffers to give and receive support so she can learn the best way to forward.