InterConnect Support Public Blog

A disclosure story for Intersex Awareness Day: by Mary Mihevic   I write this because I stand with my intersex siblings together to say, we exist, we are not tokens, and we will no longer let the medical community violate our basic human rights and mutilate us or lie to us! Here’s why: it is 2017 and we STILL have Intersex Genital Mutilation, IN THIS COUNTRY. WE HAVE DOCTORS IGNORING THE INFORMED CONSENT OF THE INDIVIDUAL. We have fear and shame based thinking that is taking away self-determination. We have doctors influencing parents to alter babies genitals, to ‘assign’ them a biological sex when there is some visible ambiguity. We also have cancer “risk” being used as a scare tactic, without any real evidence of increased risk. I AM A WOMAN, I AM A HUMAN, I HAVE AN INTERSEX CONDITION. When I was diagnosed, my story was told to some of those that I thought were friends that would be there for me and show me love. Yet, my story was taken away from me, twisted, and used to mock me....

  by Kimberly Saviano       How is it possible that summer is already winding down? People going back to school, taking those last moments of summer vacation before Labor Day, and getting ready for cooler weather coming. Time moves so quickly, and these seasonal transitions put us in mind for planning, preparation, and thinking about the future. To that end, I'll be hosting a new series of conference calls to dig in to the long term planning for this organization and putting together the strategic vision for the next several years of the group. So much about our organization is changing and our growth has been outstanding. The first meeting will be on Tuesday evening, September 19th . Anyone who is interested and has the skills to contribute, please contact me at kimberly.saviano@aisdsd.org so we can talk about it. As things coalesce and we move forward, I'll use the newsletter to keep everyone updated! Along these lines of thinking of our combined futur...

by Lynnell Stephani Long In a few weeks the AIS-DSD Support Group conference will take place, this year in Denver. I am both excited and nervous. Lately I’ve been going through some sort of spiritual metamorphosis and it’s making me think a lot about not only the people I want in my life, but also the spiritual path I am taking. This year I can honestly say I feel my spiritual path and my intersexuality path are the same, for now. I have been a devout Buddhist and Pagan for as long as I’ve been sober, 23 years. Yet at the same time I can say I have moments where I struggle with my spirituality. Someone said, when life gives you lemons make lemonade.  What they fail to realize is it takes some sort of sweetener to make lemonade, otherwise you’re still stuck with a pocket of lemons. My sweetener has always been a belief that I am exactly where I belong. By holding that truth I can say the days I struggle with Buddhism or Paganism are so for I can learn. Frederick Douglas once said, “...

  by Georgiann Davis, PhD When I was a teenager I phoned The Jerry Springer Show seeking help in resolving my family’s conflict around finances. My working-class family and I saw the show as a legitimate source of assistance. The show didn’t return my call, but my search for help was very real. Roughly 20 years later I was speaking to a producer of The Dr. Phil Show about an upcoming episode where parents of an intersex child would share their struggles with one another over the formation of their child’s gender identity—a four-year old child named Aubrey. Within 72 hours, and thanks to Skype, I was on the Dr. Phil set ready to share my personal and professional experience with intersex. My hope was that I could help these parents, or anyone else with intersex experience, understand that gender was fluid and contextual. Mostly, though, I just wanted viewers to know intersex was a normal and natural variation. When the show previewed on the internet, I heard a number of...

by Marissa Adams “The best and most beautiful things in the world cannot be seen or even touched – they must be felt with the heart.”  Helen Keller Hello everyone! So I was asked by our lovely AIS-DSD president, Georgiann Davis, and also Amber Jones, to write a summary of what my first AIS-DSD conference was like. Well I love writing, so it’s not going to be a summary it’s going to be pretty detailed, I hope that is ok. This conference was truly an eye opening, life changing experience to me so I have decided to be pretty detailed in giving specifics of my past. Well I was born to two loving parents on August 24, 1992 at the Brigham and Women’s Hospital in Boston, MA. My parents were stationed in Maine at the time, and I was 2 months premature and there was no hospital at the time equipped for delivery of a baby that premature; so they put my mom in an ambulance for 2 hours to Brigham and Women’s in Boston. *The following is based off of what I have learned from my medical records ...

  Dear AIS-DSD Support Group Members and Allies   by Georgiann Davis, PhD   Before we celebrate the beginning of a new year and the 20 th year anniversary of our organization, I’d like to thank each and every one of you for your involvement in all that we’ve accomplished in 2014. When AIS-DSD Support Group was formed in 1995 (then known as AISSG-USA Support Group for Women and Families), I was recently diagnosed with complete androgen insensitivity syndrome. My parents felt isolated, and I felt scared. I was not told I had CAIS, but by the way my parents were Fun Group Shothandling the diagnosis, I assumed something was seriously wrong. My parents and I didn’t know about the AIS-DSD Support Group, and I grew up all alone.  In 2008, my world turned around and it felt amazing. I attended my very first AIS-DSD Support Group conference in Chicago, IL, and I was welcomed with open arms into a community that I will forever see as my home. I was also determin...

  A Doctor’s Experience at the AIS-DSD Support Group Meeting by I.W. Gregorio Things they teach you in surgical residency: The best way to sew subcuticular stitches. How to place a central line. How to perform laparoscopic (keyhole) surgery. Things they don’t teach you, except by trial and error, in a sink or swim fashion: Empathy. How to talk to patients about difficult topics. How to connect them to people who understand what they’re going through. The first time I ever treated a woman with AIS, I’ll be honest: I was excited. So was my attending surgeon as he told me about the case while we scrubbed for the operating room. Typically, in residency, the senior doctor works the patient up–residents often don’t meet the actual patient until just before the surgery–so when I learned that my patient had AIS and was going to have a gonadectomy, I nodded my head. I blithely assumed that my attending had gone over the appropriate risks and benefits of the surgery. During me...

  by Georgiann Davis     Thank you for visiting the AIS-DSD Support Group. We are a vibrant community of individuals with DSD traits, parents of individuals with DSD traits, and medical providers. All of us are here for you, so please know you are not alone. AIS-DSD Support Group offers support of various forms including resources about various diagnoses, newsletters, and most importantly, the ability to connect with similarly situated others. Each year we hold an annual conference that lasts a long weekend usually in June or July.  While the conference is held in a different location each year (for example, in 2013 we met in Boston and in 2012 we met in Oklahoma City), the core of the conference remains the same.  Medical professionals speak to our members about scientific advancements, parents discuss their experiences with other parents, and adults with intersex traits share their thoughts and feelings in private sessions.  In the evenings, we also make ...

  The following story by Jeanne Nollman was published in 429 Magazine in March 2013:     Walking across the University of Arizona campus the warm heat soaked through me in the Tucson desert.  I was a 25-year-old woman about to graduate and had just ended a long-term relationship.  My family was located on the east coast and I was alone, about to face a far greater challenge than either my college studies or relationships could have prepared me for. That day I had an appointment with my doctor at the university health center.  I would find out what was in my medical records from testing and surgery dating back to when I had been 18 years old.  I had flown to New York the previous summer to hand deliver a written request for my medical records to the hospital where the testing had been performed.  I had to go in person because months earlier, my doctor had made a written request for the records to Albany Medical Center in New York, and they responde...

   July 18-21, 2013     Every summer, the AIS-DSD Support Group hosts a conference in a different North American city.  We come together as individuals and families affected by DSD for an unforgettable few days of support, education, and fun. This year’s conference in historic Boston, Massachusetts will also include a new track for men with DSD.  As always, there will be programs on Friday and Saturday specifically designed for affected adults, teens, parents and families. Registration and informal social gatherings will begin on Thursday late afternoon/early evening.  The traditional programming will conclude at noon on Sunday, and an exciting new advocacy program will be offered to those who want to stay through the afternoon! REGISTRATION : Opens April 1, and space is limited – Please register early! The conference fee will remain at the 2012 rate of $225 for those who register before May 15th ($25 Savings!), and $250 after that date.  Registr...

    from Jeanne Nollman     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....

    by Jeanne Nollman      Welcome to AIS-DSD Support Group for Women and Families. If you are finding our site for the first time, please know that you are not alone.  Our network consists of hundreds of women and families whose lives have been touched by Androgen Insensitivity Syndrome (AIS) and Disorders of Sex Development (DSD).  There are dozens of diagnoses included in the DSD umbrella. The Adult Women’s Support Group includes a variety of these disorders, while the Parent Group includes any family who has a male or female child with any DSD.  We are also able to provide men who have a DSD with a referral to a newly formed support group. We can provide you with opportunities to join a support group, receive newsletters, and resources.  We partner with many professionals who can assist you in requesting medical records, and find medical and psychological services.  Most importantly, we provide members with the opportunity to connec...

      2011 Annual Conference     Every summer, the AIS-DSD Support Group hosts a conference in a different North American city.  It brings together women and children affected by DSDs and their spouses, partners and families for an unforgettable few days of support, education, and fun. The 2011 conference will be held July 7-10 in Seattle, Washington.  If you are not currently a member of the AIS-DSD Support Group or email circle, please contact us to learn more about how you can attend. You can also get a brief look at this year's agenda:  Download in PDF or Word format. The conference fee is $250 per person. This includes meals on Friday and Saturday, and breakfast on Sunday. There will be three days of programming designed specifically for affected adults, young adults, teens, parents and partners. Hotel accommodations are also available separately at a great rate of $99 per room/per night. This rate expires June 13, so make your reservations s...

by ''Cindy'' I was born looking like other baby girls, and my intersexuality was not uncovered until age 17, when I visited a doctor since I did not menstruate. My doctor discovered I had male gonads and XY chromosomes, but — following standard medical practice in the 1970’s — lied to me about what they had found.  They simply told me I couldn't have children due to a "birth defect", but there was nothing to worry about, as I was a completely normal female.    I did not learn the full truth and the significant health risks of my syndrome until age 34 in the early 1990’s. I have the complete form of Androgen Insensitivity Syndrome.   Standard medical protocols today urge individuals with AIS to have our undescended testicles removed in our early 20's to prevent testicular cancer at mid-life.  Had I not become inquisitive on my own at age 34 about my medical needs, I might have developed cancer and died very prematurely – no thanks to these doctors. I ha...