Dercums Disease /durkemz/ [Francis X Dercum U.S. neurologist, 1856-1931], a potentially fatal disorder characterized by painful localized fatty swellings and nerve lesions. The disease mainly affects menopausal women.
Hi. My name is Christina Babin and I have Dercums disease (its OK not very many doctors know about it but whats not OK is that the doctors are not doing anything about it) and it was a long hard road getting diagnosed. After hearing doctor after doctor tell me "sorry but we cant find anything wrong and your tests are basically normal", I was still not helped for the pain I was in. I was really beginning to believe I was mentally ill.
Then I found Dr. Coomber and Dr. Coomber told me he believed that something was wrong and worked with me but again all my test were coming back basically normal. He treated me for the medical problems that were apparent, such as high blood pressure, asthma, migraine headaches, anaphylactic reactions, sleeping problems and allergies. He didnt know what to do about the large lump (hump) thats on the top of my spine/base of the neck or the lumps down my spine (3) or the ones in my stomach. They were all very painful. Besides the pain medications I was taking (to which he was afraid I was going to become addicted) Dr. Coomber offered me trigger point injections in the lumps. He didnt know if it would help but it was all he could think of. He ran a test for Cushings syndrome and test after test for the blood pressure. Then I started to have chest pains; thats when I started to get really scared and with all of this going on I had the unexplained pain. When I thought things couldnt get any worse I began to lose my eyesight for short periods of time.
Thats when I decided I needed to do something myself and I went to my local library and the librarian told me about a medical library in a close by town (Petaluma CA). I spent weeks at the medical library. The volunteers started helping me and began getting really involved. Im so grateful to each of them. We found two diseases that fit: Madelungs syndrome and Dercums disease. I printed out the information we found on both diseases and I took them to my PCP. Dr. Coomber was just as excited as I was. At that point he sent me to see Dr. Axel Hoke, saying that Dr. Hoke was really good at diagnosing diseases. Dr. Hoke told me that he agreed that it was either Madelungs syndrome or Dercums disease and he wanted me to go see a doctor at UCSF Medical Center, a Dr. Grekin.
So off to UCSF I went, to see Dr. Grekin. Dr. Grekin is a dermatologist as is Dr. Hoke. Well Dr. Grekin and his associate walked in examined me and said you have Dercums disease. At first I was so happy to finally know what was wrong with me. Then I got the bad news or should I say the start of a long list of bad news. Dr. Grekin told me he could not do the surgery but he knew a doctor in plastic surgery that might be able to do the surgery. His name was Dr. Hoffman who is also at UCSF. Then Dr. Grekin told me what he knew about the disease. That doctors dont know much about the disease. They dont how, why and most important they dont know how to treat the disease and that I was going to have to learn to live with the disease (or die with it). Well needless to say I was devastated. I made an appointment to see Dr. Hoffman.
When I went to see Dr. Hoffman, he said he had never heard of this disease, but agreed to do some of the surgery. I was told that he could not do all the tumors that I have, that I would have to pick the ones that hurt me the most. By this time I now had at least 100 tumors. Im going to have to go with this, because this is the best offer I have. This was all a year ago. And to date I still have not had surgery.
I have a new HMO, Health Plan of the Redwoods in northern California. My new insurance will not OK me to go to UCSF. They want me to go to a local doctor. I have been to three and they will not do the surgery. The top reason given is that the tumors will most likely come back.
I am now in a wheel chair most days because I have so many lipomas in my legs. I take MS Contin for the pain (long acting morphine) and Vicodin. There isnt a day that I dont hurt. The lipomas in my stomach (the size of a basketball) make it hard to eat. They cause nausea and swell so large at times. I only sleep maybe three or four hours at night so I have to nap during the day. The pain is so intense when I lay down or walk. Just to stand and do dishes is a great chore for me. I itch all over and have extremely dry skin. I feel that the tumors dehydrate me and thats the reason I have dry skin. I am tired most of the time and yes, depressed. But I think anyone would be depressed if they were in this kind of pain and being told that there is nothing that can be done to help them. Some doctors tell me I will die from this disease. Wouldnt you be depressed too? I now have around 150 tumors (lipomas).
I think the worst for me is that this disease is hereditary I have three daughters and six grandchildren and I pray every day that somebody will find a cure and that will never happen if the medical field keeps ignoring this disease. There are days when I just dont want to go on; many days the pain just gets to be too much.
Please if you are in pain and doctors tell you there is nothing wrong with you dont listen to them, go to another doctor, do some research on your own, go to the Internet. There are others out there just like you -- you are not alone.
E-mail me at: [Editor's note -- No current e-mail address]
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Created on 23 Jan 1999
Updated on 18 Nov 2003
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