"Hit a dead end"

About: Crosshouse Hospital / General Surgery

(as a relative),

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.

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Responses

Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran

picture of Eunice Goodwin

Dear Penny123,

I am so sorry this relative is feeling so alone and isolated and in pain. I am no expert on this disease either, as I am sure you will have concluded, but I think there are things we can do to help reduce her isolation. This will need you or your close relative to contact me either by phone on 01563 826222 or by email on eunice.goodwin@aapct.scot.nhs.uk

My thoughts are -

- we can establish where the expertise does lie and sign post your relative to this

- if a referral external to Ayrshire and Arran is required, I can explore this

- we can find out more about this disease in case there is something that can be helpful for management of the symptoms

Also

It strikes me that if this person feels isolated and alone, other sufferers of this may also. I think it may be helpful to talk to other sufferers. 'Support' groups are not everyone's cup of tea and because of confidentiality, it is sometimes difficult to connect folk unless a professional organises it. In the absence of 'an organiser' if you would like to speak to other sufferers it need not be a support group as such. Just getting in touch and having a chat may help. If other sufferers or relatives of sufferers would like to speak to you, I am sure if they contact me directly I can put you in touch with each other with permission of course. From my little research of Dercum’s Disease, this is not going to be a large task due to the small number of sufferers.

As it is Easter, I am sorry, I will not be back at my post until Tuesday but I would be delighted to try to help in any way I can.

Thank you for discussing this with us on PO, I hope we can help your relative and it may also help other too.

Best wishes.

Eunice

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