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Intersex Support Groups

2012 AIS-DSD Meeting–Jeanne Nollman

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Message from Jeanne Nollman

President

AIS-DSD Support Group for Women & Families

 Impressions of our annual conference–Finding self and embracing community

Our 2012 annual conference in Oklahoma City was a wild success.  The temperatures were fairly mild, and the hotel was very welcoming.  We had about 125 registered participants.  A third were DSD women/children, another third family members/parents, and the remaining third comprised of medical professionals and allies.  Many in attendance were first timers.  Our attendees came from all over the United States, and as far as Italy, Brazil, U.K., and from Canada.

Arlene Baratz, mother of two AIS women, medical advisor, and co-moderator of the parent group, hosted a spectacular conference.  There was a diverse mixture of seminars/workshops that provided information and support to all of our attendees.  Subjects covered this year included: mental health, advocacy, DSD 101, informed consent, infertility, adoption, PTSD, and disclosure.  A considerable amount of time was set aside for participants to be able to share their stories. We also had a special Congenital Adrenal Hyperplasia (CAH) track this year. We are eager to develop programming and opportunities for participation in this critically underserved community.

Seminars/workshops were geared towards DSD teens, adults, and parents/families. Childcare was provided for the little ones. Seminars/workshops were lead by physicians, psychologists, social workers, lawyers, and DSD leaders in the community. The keynote address by Bo Laurent was riveting.  She gave us a personal account of the birth of intersex awareness and how intersex/DSD advocacy has evolved.

Thank you!

This year we did not have a silent auction but instead raffled off donated items.  The raffle was a huge financial success and a whole lot of fun!  Thank you to everyone that brought or sent something for the raffle. A big thank-you to all our volunteers and raffle ticket sellers.  Proceeds help fund scholarships to those in need who would otherwise be unable to attend the conference.  Big thanks also to all who made donations to AIS-DSD.  These donations fund scholarships and pay for services that keep the organization running smoothly.

Continuing Medical Education

This year we had a great showing (approx. 65) of medical professionals at our third annual one-day medical conference. Participation is growing every year and we have high hopes that projects will spring forth as a result of some brainstorming sessions to look at improving standards of care for individuals and families impacted by Disorders of Sex Development.

Concurrent track for males with DSDs planned for 2013

As some of you may know, an online men’s DSD support group was formed this year.  It currently has a handful of men involved.  At the conference we had several male children with a DSDs in attendance. The board has approved a male DSD track to run concurrently with our conference in 2013.  We feel this is a “best practices” move to service our male children who will soon be adults.

Plan now to join us in Boston next summer.

We are excited to announce that our next annual conference will be in Boston, Massachusetts. Tentative plans are underway for future conferences in San Francisco (2014) and Cincinnati (2015).  When planning future conferences, we look at finding a medical facility that has a DSD team, affordable airline fares, and a hotel that can accommodate our needs.

We’re here for you.

To become involved in our email circles and private social media for affected adults, parents, teens and emerging adults, write us at AISDSD AT HOTMAIL DOT COM and be sure to check in at WWW.AISDSD.ORG for more info and the latest news on conference planning.

President-Jeanne Nollman

An Intersex Primer

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Hermaphroditus–that mythological creature both male and female–the double-sexed child of the Olympian gods Hermes and Aphrodite–does it survive today?

Human sexual development is a complex process involving differentiation into male and female, from fetus to adult. The process can be misdirected genetically, or break down along the way, resulting in a reproductive system that remains unfinished. Intersex is a blanket term for the various conditions resulting in these differences.

Actually, DSD–Disorder of Sexual Development–is the term some prefer, intersex/intersexed being somewhat politically incorrect, and hermaphrodite so often misunderstood.

Although the markers of sex–genetics, gonads, genitals, etc.–aren’t all on the male side or the female side, in intersex the choice of gender isn’t an issue as often as one might think.

Complete Androgen Insensitivity Syndrome (CAIS) leaves the body unable to process male hormones. An XY conception becomes a female child with testes in her abdomen and no ovaries or uterus. The testes don’t produce sperm, but some of the testosterone is converted into estrogen, which gives the child a feminine puberty.

Swyer Syndrome or Pure Gonadal Dysgenesis is a condition in which the testes don’t form; the result is an XY female with a uterus but no ovaries.

Turner Syndrome results from the loss of the second sex chromosome. Turner babies are female, but their ovaries are only streaks of tissue. Because the sex chromosomes help determine height, Turner Syndrome women are short-statured, averaging something like four-foot-eight as adults.

Klinefelter’s(XXY) and Kallman’s are two intersex conditions affecting men. They don’t ordinarily result in genital ambiguity. Because of the extra sex chromosome, the average adult height in Klinefelter’s is greater than in XY.

None of these intersex conditions result in the mythological hermaphrodite, at least not in the sense of having both sex organs. When intersex affects the genitals, they turn out somewhere between male and female. The Quigley Scale describes the range of intersex genital shapes.

Partial Androgen Insensitivity Syndrome(PAIS) results in ambiguous genitals, and breast development at puberty. The severity varies depending on which genetic mutation is responsible.

Congenital Adrenal Hyperplasia can result in masculine genital development in an XX baby, sometimes enough so that the child is raised male. Although CAH can be fatal if not treated, most CAH girls can bear children. One possible complication in CAH children being raised as boys is a feminizing puberty.

A 5-Alpha Reductase deficiency in an XY baby results in feminine genitals, but masculine development at puberty. 5-Alpha children, although sometimes castrated by their doctors and raised as girls, can be fertile males.

Mixed Gonadal Dysgenesis is a partial form of Turner Syndrome. Some cells have a Y chromosome; some don’t. The distribution of the cells during fetal development determines how the gonads develop and how tall the child will grow.

The medical definition of hermaphroditism is having both testicular and ovarian tissue. In Mixed Gonadal Dysgenesis, the child may be born with one testis and one streak ovary. Or they may have two ovatestes. Streak ovaries are non-functional and mixed gonadal tissue often results in cancer.

When a child is born with ambiguous genitals, parents and physicians must decide whether the child should be raised as a girl or a boy. Most experts recommend that a gender be chosen for the baby, but cosmetic surgeries be put off until the child can participate in treatment decisions. Until then, it’s important for parents to preserve their child’s options.

With or without surgical intervention, some children reject the gender assigned them. Determining when a gender change is appropriate may be difficult. Children aren’t always willing to verbalize their feelings and may not be aware of their options.