Just Learned you have a DSD?
If you are just learning about your DSD (disorder of sex development), you may have some urgent questions... Here are a few informal thoughts:
Am I really still a girl?
Yes you are, really!
What do I tell my partner, family, friends?
Nothing today, wait until you’re fully informed, and then gradually share when it’s safe & you’re ready!
Where can I go for support? Medical questions? Counseling?
What decisions do I need to make today?
Go slow, first get a good medical diagnosis, and then begin your search for childhood medical records. Next start here with these questions for your doctors. Next write us for support of you!
Do I need to have surgery right away?
The need for surgery is dependent on a number of factors including an individual's specific condition and overall health. Some conditions may not require medical intervention, whereas others may require more immediate attention. AIS-DSD Support Group is not meant as a medical advisor. You should obtain the advice of a trusted physician, and know that you are free to seek a second (or third) opinion if you desire.
Am I going nuts?
You may think so, but no!
Do I need to change my gender? My whole life? What I wear? Who I am supposed to marry?
These are all tough questions... our parents & adult e-mail circles can help you with these issues in the long-term. But for today, know that you’re still a woman! You should dress as you always have -- you’re still you! And you’ll likely marry whomever you fall in love with, it’s going to be okay!
Am I going to die?
Yes, sadly none of us gets out alive from this lifetime. But it won’t be soon, and it won’t be from having XY chromosomes...you’ll live to be a ripe old age just like the rest of us we can only hope for!
Can I be sexually active?
Yes, and we’re here to help give you support on how to be healthy, active and fulfilled in and out of your bedroom...
Still freaking out a bit? Below is a welcome letter from a young adult with Complete AIS named Katie Baratz Dalke. She is a recent graduate in the Philadelphia area, and wrote this letter a few years ago. Katie has recently graduated and married Sam (mentioned below)! Read her message below, and you can write her directly if you wish....
My name is Katie Baratz, and I am a 25 year-old woman living in the Philadelphia area. I love dogs (especially little ones), knitting, singing, and traveling with my fiancée, Sam. My favorite color is pink, I want to be a doctor when I grow up (I'm a medical student now), and I'm a Sagittarius. Oh! I almost forgot. I have Androgen Insensitivity Syndrome.
I was diagnosed with AIS when I was 6 years old, when I had a hernia operation and my doctors found that I didn't have a uterus or fallopian tubes. Because I was too little to understand all the details, my parents told me pieces of the story bit by bit. Each new part of the story was painful and scary to hear. It's hard to feel different, especially in a way over which you have no control. I spent a long time feeling sad, lonely, and mad at the world.
My parents had found the AIS Support Group, and going to my first meeting was amazing and started me on my way to feeling better. I met beautiful, smart, and strong women with AIS, Swyer's Syndrome, MRKH, and many other similar Disorders of Sex Development (DSD) who had gone through the same things I was. They immediately supported me and loved me, and best of all, understood how I felt without me having to explain it. The strength I got from that group helped me to find the words to talk to my parents, friends, and boyfriends about how I felt and what AIS meant to me. Eventually I came to realize that AIS is not who I am. It is part of me, but not all of me. Some days I still feel sad and overwhelmed, especially when I remember that I cannot become pregnant, but I know that when I feel that way I have a group of loving people who can carry me through the feeling. And my fiancée and I are excited to adopt our family someday, too!
I've worked very hard to make having a DSD a positive part of my life. I talked about it openly at my college, which led to opportunities to give talks at other colleges, medical schools, and meetings of doctors and nurses. It also led me to tell my story to the media, from NPR to Marie Claire magazine to the Oprah Winfrey Show. Now I'm a medical student at the University of Pennsylvania, and I'm trying to figure out how, as a doctor, I can best help people with DSDs.
It's scary to be so open with having a DSD, but the reason I do it is the same reason I'm writing you right now--to tell you, my new sister, that you're not alone and that although it may be hard, it will get better. I know over 100 wonderful women and teens with AIS and similar DSDs who are waiting to reach out and help you when and if you need it. You can come to our support group meetings, e-mail with us as a group, or chat with us on the phone or internet one-on-one. We also have a group specifically for our sisters who are ages 13 to 25. We talk about things like important medical issues, relationships and sex, and taking care of your mind. There are also people for your family to talk to, because they definitely have questions too.
So please, don't be shy. Look around this web site and you can contact me individually, or send me your contact information and I'll get in touch with you.
Welcome to our sisterhood! I'm so glad you're here. Just remember that, although it may not feel like it now, everything will be better than okay. And you have a whole community of women waiting here to help you get there.
(You can reach Katie at aisdsd at hotmail dot com. We will forward your email to her directly.)