Please take a moment to introduce yourself to the community. Everyone here has something to share about Dercum’s Disease. For the discussion boards, we ask that you keep your full name and location private.
Hi everyone. Evan here. It's been a long time since I have been here. As the Dercums has become more progressive, I have found myself having to fight harder to not fall into a space of isolation.
I just got back from San Diego and seeing Dr. Herbst
Hi, I’m Pamela. I will be 53 this week and I have apparently had Dercum’s Disease for most of my life. I was finally diagnosed last year and am participating in Dr Herbst research study. I wish to connect with others who are struggling with this disease. I also want to learn everything I can about DD and do what I can to help others.
I like many have Dercums Disease, being newly diagnosed of this rare but non cure, as of now. I am looking for others that are willing to stand it out, till there are cures either by the mapping of the genome, or a drug that either suppresses it, or cures it.
Hello all. I have had these tumors for over 35 years. I’ve had some removed, and enjoyed temporary relief, but they have always come back in force. I am living with the pain and take Advil, for the so so days and Vicodin for the more painful days. I am interested in knowing if research is being done and what the long range results might be. I am 59 and have at least 50 on my arms, torso and legs. Thank you.
My name is Melinda and I was diagnosed with Dercum’s 3 years ago. With selective removals, pain management and a supportive husband, I have been able to return to work part time. My family & I all participate in Dr. Herbst’s ongoing research and are so thankful for the help she has already given and pray she will be able to find more answers in the future.
Hi - I was diagnosed with Dercum’s in 1994.
I have suffered for a very long time with this disease and now desperately want to help research and find a cure so that others do not have to live what I have had to suffer with no support or even belief from family or friends. If I can help at least a few people then it will have all served a purpose.
My name is Belinda and I have Dercum’s Disease. I discovered I had this disease by researching my condition on the internet. I was officially diagnosed in Jan. 2006. I would like to learn as much about this disease as I can. I want to connect with other people to share what I know and to find out more about Dercum’s from others that I don’t know.
i live with several health conditions ,such as dercums disease,brittle asthma, dialated aortic valve with high blood pressure,steriod induced diabetes just feel that sometimes i’m living in a world of illness struggling to keep my family of 3 teenagers together which eldest {18} is expecting my first grandchild and husband thats in constant pain finding hard to walk s he awaits a knee replacement. what i need at the moment is to find some good info that i could take to docs about dercums so i could get some understanding about this disease and the pain i am in, and that it is not as rare as they seem to think
My Dercum’s Disease is making it increasingly difficult to be physically close to another person. It’s painful to be touched on so many places of my body. I get so fed up. I wish these darned tumors could just be taken out, just go away.
I’m a 49yo divorced male in rural east-cental Nevada. I have had DD for between 7 and 25 years or more. It’s hard to tell! I had 7 years of suffering, pain, being misunderstood and humiliated by the medical establishment, friends, family, co-workers. Only in the last 2 months did I find my disease. I got a good enough doctor and when he mentioned lipomas in the fatty tissue I got online and had my disease ewithin a few minutes! Everything fit together. Now What?!?
Hello everyone! My name is Mary Lou. I live near Buffalo, NY. I have yet to be diagnosed with DD. I suppose that will happen just as soon as I find a doctor in my area who has heard of this disease. Over the past 15 Years, i have had about 14 lipomas removed, and have noticed a steady progression of the other related symptoms. I would love to meet someone in my area who suffers from this disease, and who can offer a name of a doctor who can help me.
Was diagnosed with Dercum’s in 2000 by a Rheumatologist. Am participating in Dr. Herbst’s research program and saw her in August of 2005. I am a moderator on the Lipoma Forum which discusses all types of lipomatosis, including Dercum’s. I am looking forward to sharing symptoms with like people and discussing things that help us cope with daily life.
I’ve had DD for at least 20 years. I’m now 47 years old, wife, mom of 3 kids and a newly made grandma of one beautiful granddaughter. I’ve been able to have several major surgeries the past 2 years to remove a lot of tumors and the result has been improve quality of life, improved mobility and lessened pain. I still deal with dd daily but it’s less of a burden. I do have new dd growth and I know my improvement has a limited time but I’ll take each day and be thankful.
I raise and show English Setters and have some beautiful Shetland ponies to hitch to cart and enjoy. I had to change my hobby from raising and showing ponies to the smaller gentlier English Setter because of the DD…but I’ll keep a few ponies to enjoy. The Lord is good to me, gives me strength and I have seen many reasons that this dd is part of my life.
I have a supportive husband and I’m so thankful.
I look forward to learning more about DD through this new community.
Best to all… Christie
I think I may have Dercum’s, but the Doctors won’t diagnose. I would like to know more about the desease and what it means to have it. I’d also like to talk to people who have similar issues.
I have had Dercums 11 years I am 41 , I have 28 surgery within the 11 years… struggling ever day … Hopefully they will find something to help us soon…
Lyonzie
I have Dercums Disease. I would like to read about others who have this disease.
learn about this disease and new ideas on treatment options and for support and encouragement.
You all know me from the Dercum’s Support Group. I’ve been a member since November 2005 I believe. I live in Potsdam, NY and I was diagnosed with Dercums Disease in January of 2006.