Dercum's Disease Diagnosis Registry

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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 entries we have so far:

#	Sex	Age	Location	Diagnostician	Year	Other Comments
			UNITED STATES			(revised: 17 November 2010)
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	50	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
50	Female	62	Overland Park, KS USA	Dr. H. Lindsley, Kansas University Medical Center Kansas City, KS.	1990	The pain, stiffness, heat intolerance, sweating and fatigue I experience is overwhelming! This has effected every aspect of my life.
52	Female	45	Lynn, MA (near Boston)	Dr Bruce Warous, Reading Mass (My PCP)	9/25/08	I had symptoms for 20yrs. But actively started to search for answers and treat symptoms aggressively 8yrs ago when condition progressed.
53	Female	29	Anchorage, Alaska	Dr. John H. Bocachica of the Alaska Native Medical Center in Anchorage, Alaska	1/12/09	I have had symptoms since puberty around 12 years old; extreme fatigue, lumps that hurt, depression, memory loss, headaches.
54	Female	46	Pennsylvania	Dr Michaels, a neurologist in Lower Burrell PA	2007	My Dercums became over active when I went through menopause!! I was only 38 years old
55	Female	30	Bethel, Pennsylvania	A dermatologist ??	3/2009	I found my first lump at 11 yrs old. How am I gonna be a good mom if I’m in pain all the time
56	Female	50	Philadelphia, PA	Dr. Robert A. Centrone, D.O. (Internal Medicine) Drexel Hill, PA	2001	On March 3, 2004 I discovered my first fatty lump a week after having a 3 month dosage shot of Lupron, which threw me into temporary menopause in preparation for a hysterectomy.
57	Female	51	Clarence Center, NY	Dr. Kevin Kulick, in Buffalo, NY (dermatologist)	2005?
58	Female	49	Lamoine, Maine	Dr. Kimball at Mass. General in Massachusetts.	2004	I have tons of tumors all over my body and have had tons of them removed
59	Female	43	California	Dr. Elliott and Doctor Fiorentino are at Stanford Hospital in Palo Alto, CA	4/2009	Doctor Elliott is immunology and Rheumatology. Doctor Fiorentino is in Dermatology.
60	Female	36	Lanett, Alabama	Dr. Jack Arbiser, Emory Clinic, Atlanta, Georgia	2009?	My mother has also been diagnosed with Dercum's.
61	Female	??	Joliet, IL	Dr. Leah Durst at the University of Chicago Medical center	2008	took 5 years to find a doctor to make the diagnosis.
64	Female	30	Anchorage, Alaska	Dr. Bocachica of the Alaska Native Medical Center in Anchorage Alaska	January, 2009	I was diagnosed after my mother died of complications from Dercum’s in October of 2008. I was diagnosed after biopsies were done on several lumps which were attached to nerves from my right forearm. I have had symptoms since puberty.
66	Female	57	Colorado	Dr. Karen Herbst in at UCSD in La Jolla.	2007	I began having painful lipomas in my mid-twenties and had a few surgically removed. The surgeon mentioned that he had never seen such large, un-encapsulated lipomas but didn't believe they caused me any pain. Since 2007 I've had 13 more lipomas removed surgically or through liposuction.
68	Female	50	Charleston, SC	Multiple Familial Symmetric Lipomatosis Diagnosis confirmed by Todd Schlesinger MD FAAD Dercum's Diagnosis confirmed by Dr. Karen Herbst MD, PhD	MSL – 2008, Dercums – Dec, 2009	1st tumor at age 11 along my mid thoracic spine. The doctor said not to worry. Beginning in my twenties, growths began between my wrists and elbows and between my knees and hips. Due to the severe pain in my left arm, I had multiple surgeries to remove them, but the pain did not subside. By the time I was 49 they were growing up my trunk and down to my ankles, and now they are in my pleura.
69	Female	35	Houston Texas	Dr. Santamaria in Tomball, Texas and then Dr Herbst in San Diego CA	April 2010	Started getting sick when I was about 7 years old with lumps on my feet. Was diagnosed with FM in 2006.
70	Female	58	Seal Beach, CA	Dr. Secor (ortho) and Dr. Clark (derm) concurred with my diagnosis after I took an information sheet about Dercum's to them	May, 2010	I have all the symptoms for Dercum's - persistent bruising from head to toe; postmenopausal; extreme weakness in extremities; painful multiple lipomas; female; depression. I also have Sjogren's Disease.
71	Female	34	Miami, Fl	DX ?	2010	Started 5 years ago. Having a hard time finding a doctor in Miami
72	Female	51	Marion, Ohio	Dr. Bob Singh, Marion, Ohio	2009	I believe that I've suffered from this disease for many years. I have many lumps/tumors primarily in my upper arms and upper thighs. I have a large mass that is growing over the top of my right knee cap and a mass on inside upper part of my left elbow. I can feel them on my ribs and in my abdomen. I fear that I will soon not be able to bend my right knee or left elbow. I think the Dercum's is far more advanced than even I thought.
73	Female	46	Ohio	First diagnosed with my Primary Care doc, Andrew Kowalewsky, then confirmed by Dr. Karen Herbst 2010		Probably had since childhood with painful lumps on wrist, had mono is college, first real start of very painful symptoms after pregnancy 1992 in my back, DD went into full gear after illness and a fall on my right hip 2008.
74	Female	29	Elk Grove, CA	Dr. Huynh Kaiser Permanente	2010
			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
49	Female	59	Toronto, Canada	Dr. Scott Walsh of Sunnybrook Hospital, Ontario, Canada	2008	By Feb.. 2008 I counted over 50; May 2008 at least 150. Would like to contact Canadian sufferers (send e-mail to Don@dercum.org)
51	Male	37	Ontario Canada	??	1997	tumors began at age 15 removal of 22 to date all limbs lost count of number >300
67	Female	40	Montreal, QC, Canada	Dr. Pierre Lebel	June, 2010	Painful swelling and "rope-like" inflammation across my entire abdominal region, with extreme sensitivity (painful) to any kind of contact. Originally noticed as a "quarter sized" lump below my belly button and has steadily worsened over the last year despite various treatments.
			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.
62	Female	35	Sweden (now North Carolina)	Dr. Sven Söderberg, Luleå-Sweden	1998	diagnosed me after several years of pain and weight gain.
63	Female	43	London, UK	Professor Mortimer at Parkside Hospital in Wimbledon.	January 2009	After many years of declining health I was finally diagnosed with Dercum's Disease (type II)
65	Female	65	Lörrach, Germany	Dr. Ulrike Meske, Pain Therapist, Dr. Karen Herbst	2004	Mother born in southern Sweden, maternal grandmother and cousin of mother possibly had DD, First symptoms at age of 25, bulls-neck, possibly thousands of lipomas from size of rice kernel to ping-pong ball on all parts of body, large skin folds, BMI of 40%
			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

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

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Last updated 17 November 2010

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