ISNA's blog

Madison Woman Discusses Androgen Insensitivity Syndrome

Submitted by ISNA on Thu, 09/20/2007 - 21:05.

Classification: News | What We're Reading

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)

Submitted by ISNA on Thu, 09/20/2007 - 20:32.

Classification: News | What We're Reading

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

Submitted by ISNA on Thu, 09/20/2007 - 20:26.

Classification: News | What We're Reading

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!

Submitted by ISNA on Thu, 09/20/2007 - 19:55.

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

Submitted by ISNA on Wed, 12/13/2006 - 17:21.

Classification: Law

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

Submitted by ISNA on Wed, 05/24/2006 - 09:06.

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"?

Submitted by ISNA on Wed, 05/24/2006 - 09:02.

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.

Swedish researchers: Genitoplasty outcomes poor

Submitted by ISNA on Mon, 03/13/2006 - 11:21.

Classification: What We're Reading

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

Submitted by ISNA on Mon, 03/13/2006 - 10:17.

Classification: What We're Reading

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.

Intersex Declared a Human Rights Issue

Submitted by ISNA on Tue, 05/03/2005 - 09:26.

Classification: News

Today the San Francisco Human Rights Commission declared that the standard medical approach to intersex conditions leads pediatric specialists to violate their patients’ human rights.

“In issuing this report, the San Francisco Human Rights Commission has essentially declared me a human being,” said Cheryl Chase, Executive Director of ISNA. “They have agreed that I—and children born like me—deserve the same basic human rights as others.” Chase, who was born with mixed sex anatomy internally and externally, went on: “No longer should we be lied to, displayed, be injected with hormones for questionable purposes, and have our genitals cut to alleviate the anxieties of parents and doctors. Doctors’ good intentions are not enough. Practices must now change.”

Soundprint Radio looks at intersex

Submitted by ISNA on Thu, 09/30/2004 - 11:04.

Classification: Recent Publications

Intersex, a 30 minute radio program produced by Dheera Sujan of Radio Netherlands is part of Soundprint’s international documentary exchange series, Crossing Boundaries. Listen online in Real Player format as a group of women with AIS talk about their lives.

“Not telling people about your condition is more difficult than having the condition itself.”

“We appeared on tv as a kind of protest against doctors who are still saying that no one should talk about this. We showed them that we can tell 900,000 people about it, and nothing bad happened to us. In fact, we had nothing but positive reactions.”

Effects of Clitoral Surgery (Minto et al)

Submitted by ISNA on Fri, 09/17/2004 - 19:26.

Classification: Recent Publications | What We're Reading

“Our results indicate that individuals who have had clitoral surgery are more likely than those who have not to report a complete failure to achieve orgasm and higher rates of non-sensuality—in particular, a lack of enjoyment in being caressed and in caressing their partner’s body.”

“Our findings suggest that adult sexual function could be compromised by feminising clitoral surgery. Infants and young children are powerless to oppose any procedures, so genital surgery for them is not just a medical issue but also a moral one. Debate over ethics with interested parties should be encouraged and clinicians should advance the debate and help individuals and families to make the best possible decisions by producing reliable information. Many surgeons will undoubtedly feel justified in doubting the findings of this study, and will fall back on the traditional response of claiming that current techniques are more advanced than the surgical procedures we assessed. Although surgery has advanced in many ways, this is not a valid reason for complacency. In this study surgery was done 8-40 years ago, and most individuals had undergone clitorectomy. Of the three sexually active participants who had undergone the newer technique of nerve-sparing clitoral reduction, however, two had the worst possible score for orgasm difficulties(orgasm subscale score of 9).”

Berenbaum: Management of Children With Intersex Conditions: Psychological and Methodological Perspectives

Submitted by ISNA on Fri, 09/17/2004 - 11:09.

Classification: Recent Publications

“Rearing children as intersex is not advocated by health professionals or activist organizations (including ISNA).” Thank you, Sheri!

“The lack of systematic outcome data makes decisions about genital surgery very difficult. There are insufficient data regarding the functional consequences of genital surgery, but there are also insufficient data regarding the effects on a child of living with atypical genitalia. It is likely that the effects of both genital surgery and genital appearance are not the same for all individuals. Perceptions of and responses to the situation may be more important than its objective nature, and psychological support may help families develop coping strategies to foster mental health. It is important to remember that decisions should be made in the best interests of the child and not the parents.”

Physician's Rhetoric and Intersex Management

Submitted by ISNA on Tue, 09/14/2004 - 09:46.

Classification: Recent Publications

Hester, J. David. 2004. Intersex(es) and alternative strategies of healing. Ethik in der Medizin 16:48-67.
———. 2004. Intersex(es) and informed consent: how physicians' rhetoric constrains choice. Theoretical Medicine 25:21-49.
———. 2003. Rhetoric of the medical management of intersexed children. Genders 38. Available from http://www.genders.org/g38/g38_hester.html.

Tips for Parents

Submitted by ISNA on Tue, 09/07/2004 - 15:05.

The Intersex Society of North America (ISNA) is the premier resource for people seeking information and advice about atypical reproductive anatomies and disorders of sex development (DSDs). Since our founding in 1993, we have been offering policy advice, positive advocacy, and caring support for individuals and families dealing with DSDs. You can also obtain our more extensive Handbook for Parents by visiting www.dsdguidelines.org.

The following are questions we suggest you ask your child’s medical care providers. We also suggest you take and keep careful notes so that you keep track of your child’s medical history and all your options

The Management of Ambiguous Genitalia. Proceedings of a symposium. Lyon, France, April 2003

Submitted by ISNA on Fri, 07/23/2004 - 12:55.

Classification: Recent Publications

Another special issue on intersex. See table of contents at the BJU International (British Journal of Urology).

Most anguished title award goes to "How to make the least bad choice in children with ambiguous genitalia", by P.D.E. Mouriquand.

Sacramento Bee looks into intersex

Submitted by ISNA on Tue, 04/20/2004 - 15:43.

Classification: Recent Publications

The medical profession has traditionally viewed an intersex birth as a "social emergency," pushing to assign a child's sex immediately and perform corrective surgery as soon as possible, says Celia Kaye, a professor of pediatrics at the University of Texas Health Science Center at San Antonio. Doctors want to avoid traumatizing parents and help the child grow up normally, without confusion or ridicule, she says.

Read the complete article at the Sacramento Bee.

What’s happening at ISNA in 2004?

Submitted by ISNA on Thu, 03/04/2004 - 18:02.

Classification: News

In 2004 ISNA’s energies are focused on reforming U.S. medical education with regard to intersex.

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