Endocrine Perspective
IN THIS ISSUE of International Hair Route, instead
of answering a question in the usual way, I want to use this column to inform
electrologists about an important organization, the Polycystic Ovarian Syndrome
Association (PCOSA). There has been a great need for an organization to meet the
needs of women with PCOS, but until recently there has not been any. For those
of us who spend a large part of our time working with women with this condition,
the situation has been a demoralizing one. There are associations for diabetes,
heart disease, arthritis, even alopecia areata but none for PCOS. Fertility
organizations have had some involvement, but fertility is only one of the
concerns of women with PCOS. This lack of advocacy, together with the general
lack of public awareness, has made the condition even more frustrating. Amazing
for a disorder that affects at least five percent of women!
Now, I am glad to be able to report that the situation has changed. The PCOSA,
successfully launched in 1996 and granted non-profit status in 1998, is growing
rapidly. I have been very favorably impressed by the energy level and enthusiasm
of this new organization. Their dual goal is to provide education for women with
PCOS and their families, and to educate physicians: All electrologists know how
necessary this last component is!
The PCOSA also provides peer support that can transform the life of a PCOS
patient by showing her that she is not alone. Many of the effects of PCOS are
embarrassing – increased hair growth, acne, loss of scalp hair, weight gain
– and strike directly at self-esteem. Electrologists have often provided the
only support that women with PCOS ever get. Women with hirsutism often find it
hard to discuss their plight even with close friends and family members.
I know from first-hand experience that the PCOSA does a wonderful job. It is a
valuable resource for electrologists to refer their clients to. For a woman to
meet others with PCOS – or even chat with them on the Web – does a lot to
take away the stigma of the condition and to decrease the terrible isolation
experienced by so many women who suffer from it. Although I see several patients
with PCOS every day, I am always amazed at how many of them will look at me on
their first visit and say, “Doctor, have you ever seen anyone else like me.”
It is very satisfying to know that we now have an organization to which we can
refer these women for education and support.
Though I have been aware of the PCOSA for some time, I got to know the
organization well in June, when I attended its annual meeting, in San Diego. Two
hundred people attended an excellent scientific program, chaired by my good
friend Walter Futterweit, MD, of Mt Sinai Hospital in New York City, who is the
medical advisor to the organization. Many electrologists know Dr. Futterweit’s
book, Polycystic Ovarian Syndrome, the first substantial medical text on
this condition and still the most comprehensive review of the literature.
Because Dr. Futterweit was able to enlist many of the world’s leading
authorities to serve as faculty, coverage of the conference was comprehensive,
with skin aspects, gynecological issues, infertility and nutrition, being
particularly well covered. I spoke on menopause and PCOS, as well as Vaniqa –
the cream that slows hair growth – which will probably be introduced soon. I
also conducted a workshop on PCOS and teens. I was pleased to see this attention
to PCOS and life stages, because the experience of living with PCOS is different
at different ages. Teens and menopausal women have had even less information
available to them than others with PCOS.
The PCOSA plans to have a similar annual meeting every year; the 2001 meeting
will be held in Philadelphia in the spring; exact dates have not been set. I
recommend it to all electrologists as a very valuable educational event. The
association also plans to have a series of regional conferences. I will be
speaking at the one in New York City, at Mt Sinai Hospital, on September 10,
2000. (This is as good a place as any to announce to my readers that I am
planning to move my practice to NYC sometime this fall.)
PCOSA was founded by a courageous woman, Christine Gray Dezarn, with help from
Mary Clark. Christine has PCOS, but like so many women with this condition she
searched in vain for explanations from the medical establishment. Finally, it
was through the Internet that she was able to contact others like herself. All
women are indebted to her for her work in founding PCOSA. I have no doubt that
the organization will become an increasingly major presence among voluntary
health organizations. They have successfully raised funds for excellent
meetings. This year, the San Jose Padres Wives’ Charitable Foundation included
PCOSA as one of its beneficiaries.
Some of the officers at PCOS are: Kristen Rencher, Executive Director; Corrina
P. Smith, Director of Media Relations; and Lisa Weinstein, Chapter Development
Coordinator for the Northeast. All can be contacted as described below.
I hope electrologists will make their clients aware of this valuable resource.
The Polycystic Ovarian Syndrome Association can be reached through their toll
free number 877-775-PCOS, or their website www.PCOSupport.org.
The newest program is a series of chat sessions, started in July, with several
board members as well as myself, participating. There are chats nearly every
evening – check the schedule on the organization’s website.
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