InterConnect Support Public Blog

  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...

     by Marissa Jaye     It has been almost three months since we gathered in Chicago.  I feel nostalgic just thinking back on our weekend together.  I realize that it passes so quickly and that we all crave more.  The newsletter is one of many resources that we have available to help us keep in contact.  Thank you to Nancy and to all who have contributed. Any one of us who has attended one of our annual conferences realizes that it takes a tribe to create a meeting.  I want to give a special thanks to Tryla who truly went above and beyond to make this year’s conference a success.  I also want to thank our exiting board and current board for the many hours dedicated to our gathering.  I think you will all agree that our meetings are priceless and it is because of these women that things went off as well as they did.  My deep gratitude goes out to each of you. I think we all can agree that the biggest impact of the weekend ...

    by Ann of Michigan       Enlightening, Encouraging, Engaging, Empowering …but most importantly, Embracing 46 XY would be the five words that I find to be most definitive about my very first International AISSG Conference. Within one week of being introduced to sweet Jeanne Nollman by email, I as excitedly in route to meet her in person in Chicago as well to meet others like myself for the very first time.  We had no spare money for me to go (especially at the last minute), but all I knew was that I had to go, and my husband really wanted me to!  This was one of those “all hell couldn’t hold me back” moments!! Suffering a lifetime of trying to understand the frustrating dynamics of my own body, I was now on the yellow brick road to self discovery. Like the zany trio characters of the Wizard of Oz I was no longer satisfied with the imprisonment of my shame.  I was now pressing into the hope of getting a new heart, a new brain…to get courage!...

    by Rebecca Baughman Kerns     Please join me in welcoming the 2008/2009 AISSG-USA Directors and Officers! Marissa Jaye will be taking over as president, a big job to be certain, but I have no doubt that she will do it incredibly well.  I am always so happy to see an email from our amazing Marissa.  I know it is full of heart, love and conviction. Tryla Brown will be serving as Secretary.  I am always amazed at Tryla's drive and determination.  She is a force, all 5 foot 2 of her!  I am so happy to see her continue serving AISSG as she has done for so many years. Aimee Owens will be joining the Board; a beautiful and happy thing is always said by Aimee.  She is a wonder and a joy. Cynthia Johnson will also be on the Board; a vivacious, vigorous and verbose welcome to one of my favorite ladies. And Carolina Johnson rounds out our new members.  Carolina warmed my heart the first time I saw her face.  I am so excited to s...

     by Katie Baratz     Forget my first kiss, my college grad, and my acceptance letters to medical school.  I can (roughly) pinpoint my most exciting moment to 4:03 PM, EST, on Friday, September 21, 2007, the moment my mother and I appeared before millions of viewers on the Oprah Winfrey Show. Everything up until that point was a blur: the pre-show interviews, filming the lead-in montage in my West Philly apartment, getting picked up at the airport in a stretch limo, making a mess in the dressing room (only to be told I was no worse than Paris Hilton had been), even sitting with Oprah on the soundstage and answering her questions.  It wasn't until I was sitting in a living room with 20 newly-minted med school friends watching myself on TV that the enormity of my choice sank in, that the girl standing before America and declaring that she had a Y chromosome and undescended testes was me. Only part of the exhilaration of those 10 minutes of air time c...

  by Joyce Henning       When I received the meeting info in the mail last year, I had serious doubts I’d be able to attend.  Summer is quite busy (I know everyone can relate), and weekends were booked tighter than a Denver airport hotel in a blizzard.  But, having missed the past two meetings, I knew I had to clear the calendar and head to North Carolina. Nothing beats the face-to-face contact of an annual meeting.  It’s a huge benefit to be part of the email circle, getting to know orchid sisters and sharing life’s experiences.  However, there’s a special spark to attending a meeting. Catching up with old friends and meeting new members is like a homecoming.  There seems to be enough time to catch up with everyone, but the opportunity to be immersed in a weekend of informational sessions, social hours and dinners is invaluable.  Plus, the southern charm from our beautiful Orchid Sister Nancy made everyone feel at home.  When you ...

     by Rebecca Baughman     First, I want to thank everyone who made the trip to Indiana this year.  What a wonderful and invigorating time we had!  The presence of so many first time visitors was a sight to behold. While in Indiana, the board of directors of the Androgen Insensitivity Support Group – USA held our annual general meeting, both as a board meeting and a public hearing for those interested in participating. The decision was made to hold next year’s meeting in North Carolina (July 20-22, 2007), spearheaded by our dear Nancy Evans.  The meeting was dubbed “Sweet Tea & Grits,” and promises to be an exciting time.  The decision was made to continue with the three day format, a great way to make certain that we had an adequate amount of time to stuff a year’s worth of fun into three days!  I am looking forward to a brilliant time and hope you are as well. The Board also voted on the inclusion of the terminology of “disorder...

  by Cindy Stone     On a warm summer weekend, nearly 100 of us rare orchids -- adults, dozens of parents and teens -- gathered in Indiana to give and gain support from each other.  We laughed at funny talents, hugged new friends, ate good Hoosier cookin’ and cried our way through many boxes of Kleenex.  Most of us spent some four days or more on the IU campus with equal times inside and outside the classroom learning more about ourselves and each other.  The evaluations would later say it was a magical weekend … "a weekend we would remember all our lives." For the board and planning committee, the weeks leading up to the 10th anniversary 2006 AISSG-USA National Meeting in Bloomington, were filled with anticipation.  Would enough folks come for three full days of presentations?  Would parents and teens enjoy their new programming?  Our anxiety was for naught because the meeting came off just great, and the orchids were blooming in Bloomington...