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Dercums Disease foundation uk

The section is for the disussion of Dercum's Disease (Adiposis Dolorosa), a disease in the lipoma family. It is characterized by painful, irregular fatty swellings or lipomas and is frequently misdiagnosed.

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Gena

Dercums Disease foundation uk

Post by Gena » Sun Apr 27, 2014 12:56 am

Hi Everyone
My name is Gena and I have joined this group to show my support to all Dercum's sufferers on here and all over the world. I'm the secretary of Dercum's Disease and Rare Disease Foundation UK which is a newly registered UK charity. I have not got Dercum's myself but my mother in-law has and my husband, sister in-law and bother in-law have all now got lumps and pain, and show many other symptoms, so are all in the process of getting diagnosed which as we all know is an extremely long and hard procedure . Me and my husband John have 5 children together, my sister in-law has 3 boys and my brother in-law has 1 daughter. All of the children love spending time with their nan, and she loves spending time with them. I watch my mother in-law Patricia hide the pain she is in from us all, and she tries to carry on as if all is normal, as if she is not hurting from head to toe. She tries to hide her flare ups from us, telling us she's fine when we know she's not. I am in awe of her, she is one of the most amazing and strong women I have ever met. She now fronts this amazing charity as chairperson. With her strength, I know our aims will be met, because I know she will not stop until every doctor, geneticist and anyone else she can get to listen, will know what Dercum's Disease is, and this charity will raise enough money to get much needed research underway in the UK to find a cure. Patricia is a mother, a nan and a wonderful friend, but most of all she is a fighter, not only to help find answers for herself, but for everyone out there suffering. If anyone would like to have a look at our website and help the fight, please join at http://www.ddrdfoundation.org .
With gentle hugs xxxx


Last bumped by Anonymous on Sun Apr 27, 2014 12:56 am.
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