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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 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


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


Return to the
Dercum's Disease Home Page

Last updated 17 November 2010

Comments about the web page format
should be sent to the Don


The links provided above are subject to periodic checking of addresses and content. Listing does not imply endorsement, and the webmaster is not responsible for the content of the pages.  Furthermore, please don't forget that the information provided on this site is designed to support, not replace, the relationship that exists between a patient and his or her physician.