Maureen's Correspondence with Dr. Brenner

Maureen sent this fax (addresses omitted & e-mail addresses updated):

Maureen
Camarillo, California 93010

____________________________________________________________________

August 10, 1998

Dr. S. Brenner
Department of Dermatology
Tel Aviv University

Dear Dr. Brenner:

I telephoned your office last week and was told to send you a letter via FAX explaining my situation.

I am a 52 year old Caucasian woman diagnosed with Dercum's Disease earlier this year.

Before the onset of this illness, I was normal weighted and have gained approximately 25 pounds since its inception.

While doing a computer search for me, my ex-husband found a listing of your publication entitled Dermatologic diseases and problems of women throughout the life cycle which included Adiposis Dolorosa.  We have not read the article at this writing.

I would like to know if you found causality of the disease and if any treatments were successful.

In the past year I have been to several major medical centers in California, including UCLA, UCSF, Stanford, the Mayo Clinic in Scottsdale, Arizona and various doctors in other locations.

From my experience and research, little is known about this disease.

In the recent past, I have found others diagnosed with this disease. The three women I have spoken with, share some common symptoms, including the sensation that the tumors are "blooming".  We can actually feel them getting larger.  In my case, the itching starts and then a new tumor appears.  There is also a sensation of stabbing pain in all parts of the body.  Two of us have terribly sharp pains in our breasts not associated with menstruation.  Numbness in the digits of feet and hands is common.  Additionally, there is unrelenting itching in all parts of the body.

Two of us do not thermoregulate properly and after discussing this phenomenon, we both realized we never did in our entire lives.  We cannot dissipate heat well.

One woman has had a hysterectomy. I stopped having regular periods this past April with a reoccurrence just last month (July, 1998).  My symptoms started in the peri-menopause.

I personally feel this is a hormonal problem, not necessarily limited to the female hormones, but perhaps further up the chain with the pituitary being the culprit.

We have all had many batteries of tests and so far little help.  Personally, I think it's an estrogen/progesterone imbalance and have used natural progesterone cream, which did not seem to help.

Some of us have also noted that we may be sensitive to metal toxicity - me with enormous amalgam dental fillings containing mercury and another woman who worked with lead.

The last doctor I spoke with - Dr. Saperstein, in Beverly Hills, California, suggested I try liposuction. My concern is the procedure might either aggravate the condition (proliferating the cells) or cause internal bleeding if these tumors are greatly vascularized.

I would be ever so grateful if you would share your thoughts and experience about this disease.  Since this disease seems to disproportionately afflict women, I am hoping you can help us. Whatever you may share, will be greatly appreciated by us.

Thank you in advance for any assistance you give us and thank you for taking the time to read this letter.

You may reach me by e-mail at dercumdata@aol.com.

God bless you and your work madam. Shalom.

Sincerely

Maureen

And received this reply:

I received your fax of August 10th and am sorry to inform you that I am not familiar with your disease.  From your description it is logical that it might be related to hormones, but I cannot be of any concrete help in this matter. Perhaps hormone replacement therapy will provide some relief of your symptoms.  I personally am not fond of liposuction.  The hormone replacement I am referring to is with estroogen, not progesterone which you have already tried.  Perhaps the development of adipose tissue is connected with the drop in estrogen level that accompanies menopause.  Providing more estrogen may reduce the body's need to develop adipose tissue in order to maintain an adequate estrogen level.  Discuss the idea with you (sic) physician - it is only a speculation.

Please contact me if I can be of further assistance.

Sincerely yours,

Sarah Brenner, M.D.

Makes you wonder, doesn't it?

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