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Dercum's Disease Diagnosis Registry


No one seems to know how many Dercum Diagnoses there are in the United States (and other parts of the world), so we decided to start a registry that is somewhat anonymous.  Here are the first few entries: 

#

Sex

Age

Location

Diagnostician

Year

Other Comments

      UNITED STATES     (revised: 14 June 2009)
1 Female 55 Camarillo, CA Dr. T. Berger,
UC San Francisco
1998  
2 Female 51 Phoenix, AZ Dr. Mark Luba,
Phoenix, AZ
2001 Symptomatic for more than 3 years before diagnosis
4 Male 47 Omaha, NE Dr. Hurley, Rheumatology Clinic, Omaha Nebraska Veterans Hospital March 2002  
6 Female   Eden, NY Dr. E. Gosy & Dr. J. Keyes 2000 Dercum’s/ Neurofibromatosis, TB positive, Fibromyalgia, osteopenia, chronic infections, Chronic fatigue.
7 Female 58 Concord, CA Diagnosed 1981, current doctor is Dr. Kevin Degnan (Plastic/ Reconstructive Surgeon), Concord, CA 1981, 2002 1st tumor age 8 on lower right back, then tumor at age 27ish on middle right leg, self diagnosed, confirmed by Dr., have them removed (50 or so) over the years by five different doctors. Tumors mostly on the right side and very painful.
8 Female 32 Roseville, MI Dr. Fivenson, Dermatologist 1997 Has over 100 lipomas as well as multiple sclerosis
10 Female 61 Originally Southern CA, now Vero Beach, FL Dr. Hussamy, Vero Beach, FL 2002 Tumors began on my arms in 1981, originally diagnosed as "angiolipomas".  Now they are all over my body, and the condition was finally diagnosed in FL.
14 Female 59 Santa Maria, CA Dr. Dye, UCLA Dermatology, Los Angeles, CA
Dr. Van Herle, Endocrinologist, UCLA
1998 I have been taking growth hormone for 2-1/2 years with much improvement in energy, lipomas shrinking & pain control. I have written about it – see the dercums_disease group at http://groups.yahoo.com
15 Female 37 Northern CA Dr. A Solomon, Western Medical Clinic, Boulder Creek, CO 2002  
16 Female 25 Palm Beach, FL Dr. Martin Fischer, Rheumatologist, Houston, TX 2002 Symptomatic for at least 5 years prior. Also diagnosed with fibromyalgia, autonomic dysfunction, mitral valve prolapse
17 Female 44 San Antonio, TX Dr. Fetchick, Endocrinologist 2002 The tumors started in my 20s. I had to bring in the description of Dercum’s disease to be diagnosed!
18 Female 43 Central PA Dr David Adams at Geisinger Medical Center, Danville PA, Dr Vincent Herbst, Williamsport PA, Both are Dermatological surgeons. 2002 It took 3 years to get the first diagnosis. Had 3 deep biopsies. Then got a second opinion. Have had 3 of over 50 lipomas removed. A remaining one is a "monster," that's about 10 inches across (on my thigh, wraps around the front half and onto the sides) 6 inches high and protrudes about an inch from the surface of my skin.
19 Female 50 Kentucky S. L. Cook, MD/Surgeon, Somerset, KY 1998 First tumors over 20 years ago, also have Fibromyalgia, Diabetes, cardiac and thyroid disorders. Documented over 80 painful tumors to current date, 2002
20 Male 58 Stockton, CA Dr. Walter Yourchek (Dermatologist)

Stockton, CA.

1980s- 1990s First tumor occurred at age 32 and was located deep in my lower left back. Identified as a lipoma by Dr. Thomas Chin (Surgeon) Stockton, CA.
22 Female 36 Rhode Island Massachusetts General 1996 Started in my heel – I have had 13 surgeries, also DX with fibromyalgia & growth hormone deficient. I started HGT in April and I have more energy and my tumors are beginning to shrink... and I have began to lose weight…
23 Female 48 NW Florida Dr. Fisher, Dermatologist at WFL Medical Center, Pensacola FL 2000 I also have fibromyalgia/MPS, DDD, thyroid removed due to multi-nodular goiter. Have both large lumpy and small, hard, pea-sized lipomas.
27 Female 60 Massachusetts Dr. Michael J. Terlizzi, Andover, Mass 2002 Just diagnosed. Have tumors since 1980
28 Female 44 Massachusetts Dr. M. Edwards of Beverly, Mass. 1988 Symptoms started at age 25. Diagnosed after 15 years of research and severe pain
30 Female 47 Metropolitan Detroit, Michigan Dr. Ali Moiin, MD
Dermatologist at the Detroit Medical Center, Detroit, Michigan
2003 First lipoma excision 3-22-02; was size of a lemon and grew to a football or more in 3 months; saw more than a dozen doctors before final diagnosis
31 Female 47 California Dr. Gregory Enns, M.D., Stanford Medical Center 2003 First symptoms back in 1994 and became disabling in 2001
32 Female 40s? California Dr. Robt. Broer of Palm Springs (retired) ? First diagnosis in Tacoma, WA. Had several surgeries that left weird scars
35 Female 47 Canyon Lake, Texas Dr. W.C. Anderson, III MD; a dermatologist in New Braunfels Texas December, 2006 I was diagnosed in December of 2006, but I know I have had it for a lot longer, just couldn't get the correct diagnosis.
36 Female 51 Memphis, TN my Internist, Dr. Herbst September, 2007 I was diagnosed by my internist with help from myself and articles about DD off the internet and Dr Herbst's emails. I have had DD symptoms for 7 years but only got a diagnosis in Sept 2007
37 Female 48 Vermont? Bonita Libman, Burlington, VT & Rebecca Campen, Boston, MA 2005 First surgery to remove tumors in 1991, but had symptoms and tumors 4 years prior and no diagnosis until 2005 after research myself and taking info to my PA and then referred to these specialists who confirmed the diagnosis of DD.
39 Female 56 Ontario, NY Dr Karen Herbst in San Diego CA 2007 I have had symptoms for several years.
40 Female 53 Independence, Missouri ?? 2006 I have apparently had DD all of my life
41 Female 39 Sarasota, FL Dr. ?,
Sarasota, FL
2007 Symptomatic since 1997, my body is riddled with painful pea-size nodules
42 Female 36 Thomasville, NC Dr. Hicks PCP,
Thomasville, NC
2007? Diagnosis confirmed after I found the information online searching for my symptoms in 2006
43 Female 39 Colorado Dr. Herbst,
La Jolla, CA
2007 Had symptoms for 3 years
45 Female 62 Dallas, TX Dr. Kanani
Forney, Texas
2006 The results of a biopsy of one lipoma was determined to be angiolipoma and the tissue was sent to Dr. Karen Herbst who was able to give a more detailed report on it. The lipomas spread quickly and are now to numerous to count. They began on my left waist and ribs but I now have them on my chest, abdomen, arms, pelvic, buttocks, hips, thighs, knees, lower legs and ankles too.
46 Female 43 Park Hills, MO Dr. Herbst,
La Jolla, CA
2007 I have had symptoms for almost 10 years prior to diagnosis
47 Female 68 Westchester, NY Dr. Alcena
WP, NY
1984 I was diagnosed with DD when I was 44 years old. My biopsies were examined and confirmed by the Columbia University in NYC. However, prior to my diagnosis I suffered from the painful DD tumors since the mid 70's.
48 Female 46 Bellsouth.net ?? 2007 I have had 4 tumors removed, and now have about 60 more
             
      CANADA      
13 Male 46 British Columbia, Canada Dr. Irving Cranbrook B.C.
(Retired)
1998 First tumours showed up at age 15 on my back (about 10). To date, I’ve had over 300 tumours removed.
29 Female 44 Surrey, British Columbia, Canada (formerly Santa Clara, CA) Dr. Gregory Enns, Medical Geneticist at Stanford University Hospital. 2002 In retrospect the first tumor I noticed appeared on my shin, in 1982. Started progressing rapidly in late 2000, now have tumors literally from the top of my head to the soles of my feet, and they have now made my face visibly asymmetric
             
      EUROPE      
3 Female 50 Denmark Dr. Jönsson,
Kjellerup Sygehus
1999 Self-diagnosed, confirmed by Doctor.
9 Female 55 London, England
(originally lived in Houston, TX)
Dr. White, breast surgeon &  Dr. Adams, plastic surgeon, in London, England   First symptoms in 1980 - small tumor in knee. Several tumors were removed in Houston, TX, with no diagnosis. Finally diagnosed in England
11 Female 27 Landskrona, Sweden Dr. Birger Fager, Lund, Sweden 1999 I can only work 10 hours a week and need strong painkillers
21 Female 51 Essex, United Kingdom Ms. Ackroyd, cardiovascular consultant at Princess Alexandra Hospital, Harlow Essex (also by my GP) May, 2001 First lipomas appeared in 1981 on my arms. Though diagnosed "officially" in 2001, the doctors had determined it was Dercum’s previously and didn’t bother to tell me.
26 Male 40s Exeter, UK Dr A Warin of The Royal Devon & Exeter Hospital 2002  
33 Male 54 United Kingdom? Dr Skilton consultant surgeon of North Staffs, then Dr Daggett Consultant Physician at Stafford General Hospital. 1988,

then

2003

first discovered at 10 but not troubled till late 30s
38 Female 58 London, UK DD was confirmed via ultrasound at St Mary’s Hospital, Paddington, London Dec 2005 I have always had DD (unknowingly). It didn’t bother me until perimenopausal at 46yrs in 1996. No Drs were interested… Eventually, it became so bad that I demanded a hospital investigation.
             
      AUSTRALIA      
5 Male 46 Canberra, Australia Dr. T. Gavaghan 2000 Fibromyalgia for 10+ years prior to diagnosis, also have Reactive Arthritis.
12 Female 38 Perth, Western Australia Dr. Peter Randell, Perth, Western Australia 2002 Symptomatic since 1996, after a hysterectomy. Diagnosed with cellular angiolipoma (1998), CMV, lymphocytosis (1999), fibromyalgia (2002)
24 Female 34 Gold Coast Australia Dr. Drew Heinemann 2002 Had disease for 10 years
25 Female 60 Gold Coast Australia Dr. Sandra Edwards 2002 Had disease for 15 years
34 Female 46 Geraldton, Western Australia Dr. Paul Flanigan, Surgeon 2007 Noticed tumors after removal of ovary due to Teratoma growth. 100 odd lumps to date and growing rapidly. Tumors growing on nerve endings
44 Female 26 Brisbane, Australia Redcliffe Hospital
Redcliffe Australia
2006 My father has it also. It took 4 years for diagnosis by doctors
             

If you want to be listed, send me the information at Don@dercum.org


For comments, discussion or support about this disease, please contact
Maureen
Camarillo, California


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Dercum's Disease Home Page

Last updated 14 June 2009

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