Intersex Society of North America blogs

Madison Woman Discusses Androgen Insensitivity Syndrome

Thu, 20 Sep 2007 22:17:51 -0700

On Friday, September 21, 2007, the Oprah Winfrey Show interviewed Katie, Lynnell, Hida, and Arlene about their experiences of growing up with intersex conditions. Marcia from Madison Wisconsin took advantage of the attention to the issue to tell her story to the Wisconsin State Journal.

Marcia says the Oprah show is an important milestone in talking about a condition that caused so much shame that her family and doctor hid the truth from her. She didn’t learn that she had XY chromosomes until she read her own medical records at age 35.

“I hope there will be other girls like me out there watching this and knowing they aren’t alone,” she said.

Read the rest of the story at Orchid ladies test gender perception.

Congratulations, Marcia!

Going beyond X and Y (Scientific American)

Thu, 20 Sep 2007 21:35:27 -0700

The June 2007 issue of Scientific American features a profile of Eric Vilain MD (a world renowned genetic researcher, pediatric endocrinologist, and member of ISNA’s Medical Advisory Board). The article, Going beyond X and Y, discusses the recent international medical consensus which agreed to drop the term “hermaphrodite” in favor of the more neutral “disorders of sex development” (DSD).

American College of Obstetricians and Gynecologists (ACOG) condemns vaginal surgery

Thu, 20 Sep 2007 21:31:35 -0700

The American College of Obstetricians and Gynecologists (ACOG) is the main professional association for the specialty of obststrics and gynecology. They recently published a paper in the journal Obstetrics and Gynecology condemning the practice of cosmetic gynecologic surgery. This article gives a
good discussion of ACOG’s opinion:

http://www.chicagotribune.com/news/local/chi-cosmetic_31aug31,0,7734462.story?coll=chi-unitednavover-misc

Welcome, Oprah Viewers!

Sun, 16 Dec 2007 10:35:26 -0800

On Friday, September 21, Oprah discussed intersex (disorders of sex development) with Katie, Hida, Lynnell, and Arlene on The Oprah Show.

For more information regarding the issues raised this episode, please see DSD Guidelines for a free downloadable Handbook for Parents and Clinical Guidelines, a suggested reading list and links to diagnosis-specific support groups.

For more information and peer support regarding Androgen Insensitivity Syndrome and a wide variety of related conditions, including 5-Alpha Reductase Deficiency (the syndrome referred to in the book Middlesex), please visit the Androgen Insensitivity Syndrome Support Group in the U.S. or the British group’s more comprehensive website, www.aissg.org.

Here at Intersex Society of North America, we encourage you to visit our Frequently Asked Questions page. You can also order videos, or make a donation to support our work.

As of last year, there is a new international medical consensus that families and people affected by disorders of sex development should receive patient-centered care, as outlined in the DSD Guidelines. ISNA is working to make this kind of care a reality. If you would like to help us, please consider making a donation to support our work.

If you would like to discuss the show with other Oprah viewers, visit the Oprah Message Boards.

Want to see some photos of real people with Disorders of Sex Development who are not ashamed to talk about it? See photos at DSD Guidelines site and photos at Oprah’s website.

If you’ve looked over all these resources, and need to contact us, please enter your message or question at our helpdesk (you’ll need to create an account).

Advocates for Informed Choice

Fri, 26 Feb 2010 11:58:51 -0800

Founded in 2006 through an Equal Justice Works Fellowship, Advocates for Informed Choice is the first organization in the country to undertake a coordinated strategy of legal advocacy for the rights of children with intersex conditions.

DSD But Intersex Too: Shifting Paradigms Without Abandoning Roots

Mon, 26 Jun 2006 10:22:51 -0700

by Sherri Groveman Morris, Esq.

The Intersex Society of North America (ISNA) and the Consortium on Disorders of Sex Development (“DSD Consortium”) have recommended that in venues where the medical care of infants is considered, the initialism “DSD” be used in favor of the term “intersex.” While both “DSD” and “intersex” are “umbrella” terms (meaning that they encompass people born with a variety of discrete conditions but having important features in common), the former has recently been adopted to aid in classifying conditions involving sex development. Prior to the adoption of “DSD” as the preferred term, there was apparently some confusion about whether certain medical conditions properly fell under the heading of “intersex.” ISNA’s avowed aim in preferring “DSD” is to support improved medical care for children born with such conditions. To that end members of ISNA have participated in the DSD Consortium, which has produced two publications entitled Clinical Guidelines For The Management of Disorders of Sex Development In Childhood and Handbook for Parents, both of which employ “DSD” nomenclature almost exclusively.

Why is ISNA using "DSD"?

Thu, 13 Jul 2006 14:06:20 -0700

Founded in 1993, the Intersex Society of North America has always had reforming medical care for children with intersex conditions as one of its cherished goals. In our early years, ISNA also served as a support group for adults. When we incorporated, in 1999, we determined to focus our work primarily on medical reform. That means that much of our communication is created with parents and doctors in mind.

Over the past year, we have begun to use the term “disorders of sex development,” or DSD, in place of “intersex” in these contexts. It’s not our intention to make intersex an entirely medical issue. But we are addressing people working in a medical context. We have found that the word DSD is much less charged than “intersex,” and that it makes our message of patient-centered care much more accessible to parents and doctors. Our aim is to meet them where they are.

"Teaching Intersex Issues" Returns

Fri, 27 Jun 2008 14:41:47 -0700

After several years on hiatus, ISNA’s teaching kit is back! The newly revised Teaching Intersex Issues is now available.

The teaching kit is designed for undergraduate classes in fields such as Bioethics, Science and Technology Studies, Women’s Studies, and Cultural Studies and contains two weeks worth of lesson plans, including annotations of key readings and videos, discussion questions, and class activities. The kit also comes with a copy of ISNA’s Speakers’ Handbook, which contains valuable information about intersex conditions, “what if?” scenarios to help educators field difficult questions, and personal narratives from other educators and activists.

Womyn's Awareness Center Donates V-day Funds

Sat, 28 Jun 2008 12:29:50 -0700

ISNA would like to extend sincere thanks to the Womyn’s Awareness Center at Gustavus Adolphus College in St. Peter, MN for generously donating funds raised during their V-Day events on campus.

The WAC’s mission is to offer “a designated safe place for womyn and men interested in womyn’s issues to think, discuss, argue, laugh, and freely be themselves. It also serves as a resource center for feminist, reproductive rights, justice, queer, and various other issues.”

As a professor at Gustavus last year and as a research associate this year, I have seen the members of the WAC do very good (and hard!) work on campus to educate their peers and tackle the tough issues. This year alone, they’ve held several drives to collect cell phones for women, sponsored events to educate peers about sexual assault, organized programming to educate peers about feminism, and engaged their peers, faculty, staff, and administration in important conversations about diversity and campus climate.

ISNA Welcomes New Board Members

Fri, 7 Apr 2006 10:39:35 -0700

ISNA is pleased to announce that William Hanley, A.A., B.A. and Arlene Baratz, M.D have joined our Board of Directors.

Both Hanley and Baratz come to the board with a wealth of experience in the healthcare field where they have worked to understand and overcome healthcare disparities while working toward a patient-centered model of care. We’re proud to welcome these two new board members and look forward to working alongside them.

Click here to read more about “ISNA’s Board of Director

Adult Genital Surgeries for Intersex Present Problems

Mon, 27 Mar 2006 09:30:23 -0800

A recent article entitled “Adult Genital Surgery for Intersex: A Solution to What Problem?” by Mary E. Boyle, Susan Smith, and Lih-mei Liao suggests that genital surgeries among adult women with intersex conditions present dilemmas similar to those involved with infant surgeries.

After conducting interviews with six adult women who chose to undergo genital surgeries as adults, the authors concluded that the women in their study often experienced little or no dilemmas surrounding the choice to have surgery but that the women felt conflicted after surgery. Prior to surgery, the women in the study believed that having surgery would “confer normality” and help them feel they were entitled to intimate relationships. The interviews also revealed that the physicians caring for the women in the study often presented surgery as unproblematic course of action and that for some of the women challenging medical authority—even as adults—was very difficult.

Swedish researchers: Genitoplasty outcomes poor

Mon, 13 Mar 2006 11:24:16 -0800

Many U.S. physicians continue to dismiss the results from the London group of researchers, documenting poor outcomes from early genital surgery, as irrelevant. At a recent European Society for Pediatric Urology conference, a Swedish group reported similarly poor genitoplasty outcomes.

RESULTS:47 women had been operated, more than 50% had been operated at two or more occasions. 11 patients had only vaginoplasty done and in the remaining women it was combined with clitoroplasty. The cosmetic appearance as well as the function of clitoris and vagina are often not optimal. There is also a need from these patients to be able to discuss former surgery, especially since it was common in this group to state that the functional result has influenced their sexual life negatively.

UK Researchers: A knack for asking good questions

Mon, 13 Mar 2006 11:14:57 -0800

I’ve been updating my references database, and I continue to be impressed by the sophistication of the work coming from UK professionals on intersex issues. These articles are a great example.

Alderson, J, A Madill, and A Balen. 2004. Fear of devaluation: Understanding the experience of women with androgen insensitivity syndrome. BJ Health Psychol 9 (1):81-100.

Liao, Lih-Mei. 2003. Learning to assist women with atypical genitalia: journey through ignorance, taboo and dilemma. J Reprod Infant Psychol 21:229- 38.
Boyle, Mary E., Susan Smith, and Lih-Mei Liao. 2005. Adult Genital Surgery for Intersex: A Solution to What Problem? Journal of Health Psychology 10 (4):573-584.

Infant Vaginal Dilatations Continue

Fri, 10 Mar 2006 12:43:03 -0800

Vaginal surgery generally requires a kind of post-operative care called “vaginal dilatation.” After surgery, the tissue tends to get smaller while healing. In order to keep the vaginal opening from closing up, the patient (or her mother or a doctor, in the case of an infant or child) is instructed to insert an object into the vagina, pressing against the scar tissue, on a regular basis.

When performed on a child, vaginal dilitation can be emotionally scarring for both child and parent. This is one reason why many experts recommend that vaginal surgery not be performed on children with DSDs (Disorders of Sex Development) — rather, it should be made available to patients who are at least adolescent, who can understand the reasons for the procedure, and who can do the necessary vaginal dilitations themselves (if the patient is not motivated to do this, then the surgery should obviously not be performed). The surgeon’s argument that vaginoplasty can be completed with a one-stage procedure on an infant has been roundly refuted — follow up surgery will almost always be required as the patient enters adolescence. Avoiding vaginal surgery on infants and children also allows for the patient (as an adolescent or adult) to try manual pressure dilation, which has been quite successful for many women who escaped vaginoplasty.

"House" Gets It Wrong

Fri, 24 Feb 2006 16:09:47 -0800

Last night I was shocked and horrified as I watched the plot of Fox’s popular medical drama, “House,” unfold. Fans of the show stay tuned each week to see Dr. Gregory House take on medical mysteries with a sarcastic wit and his own special personality. Last night’s episode, entitled “Skin Deep,” proved that much more is flawed about this show than the protagonist. It was, without a doubt, one of the most offensive and hurtful portrayals of people with intersex conditions that I’ve ever seen.

For those who didn’t see the show, allow me to summarize the painful episode. A 15 year old supermodel presents with mysterious symptoms, such as erratic behavior and uncontrollable twitching. Throughout the show, much is made of her feminine physique, with comments about her beautiful breasts and buttocks playing a lead role in the dialogue—even among the doctors. In the course of searching for a diagnosis, the medical team discovers that the young woman has been using heroin and that her father sexually abused her once while he was intoxicated. After ruling out effects from the heroin and possible post traumatic stress disorder resulting from the sexual abuse, House finally reaches the conclusion that the young supermodel must have cancer and a series of scans reveal internal testes that are malignant.