About The AIS Survival Guide

Why I am qualified to write this content:

All of the content on “The AIS Survival Guide” was painstakingly researched and created by me – someone with complete androgen insensitivity syndrome, and is backed by scholarly sources which are cited in the content. Having androgen insensitivity syndrome makes me uniquely qualified to write this content as an empathetic authoritative source of knowledge. I have spent half my life reading scholarly papers; teaching myself and educating myself on the idiosyncrasies of reproductive anatomy with genetic mutations. I have first hand knowledge of all of the scientific material discussed on this website, as I have had these conversations with my own medical care team. I have reached out and learned under leading AIS specialists. Additionally, I not only study these conditions, I live them. I have had ultrasounds, bone density scans, pelvic examinations, and cognitive behavioral therapy to prove first hand knowledge of the anatomy and psychology of being intersex. This is my story to tell.

Why Did I create this website?

I created this website to end the shame and stigma of having androgen insensitivity syndrome. We are not victims. We are not suffers. We are just people with a mutated androgen receptor. That’s it.

When I was diagnosed with complete androgen insensitivity syndrome in 2003, little information was available, and what information that was available was horrific and traumatizing for a child to read. In 2021 when I began this website, the data was more available, but was scattered, unorganized, and in places, still factually incorrect. I couldn’t imagine being recently diagnosed in 2021 and having an easier time sorting through all of the junk and misinformation – it would be just as painful for a newly diagnosed AIS person as it was for me. As someone with AIS with web development skills, I wanted to give back to my community and create something beautiful and lasting that can help others like me.

I created this website with the hope that it can be a refuge for the 10-110 year old who is just diagnosed and is confused about their bodies. I wanted to explain the science, and remind people with AIS that they are normal, and that they are loved. If that sounds like you, then start here with the basics.

I hope that their parents can find the articles enlightening and can have their questions answered. I consulted my mom and other parents in the community and asked them what questions they have and what questions they had when they found out their children were diagnosed. If you are a parent and have questions, start here with Q & A.

I pray that the medical community can learn about our rare medical condition and improve our care and stop saying that we’re all men. Some of us are men, some of us are women, and some of us are non-binary, just like the non-AIS population. It’s not that hard.

I also interviewed my own medical care team, asked them what questions they had about AIS, and what they did to prepare for a visit with AIS patients like myself. That led to the creation of pages like the fact sheet which includes a brief about each AIS condition and what a medical care team actually looks like for patients with AIS.