I Support Access to Care - by Bethany Weddle
I don't usually get to much into the debates that I sometimes see in the TS community that center on what counts as TS, if we are truly women and the concept of intersex. With the recent announcement by the TSSUS that clarified the most up to date definition of the karyotypes included in the definition of Turner syndrome, there has been more debate than ever and some of it has been down right nasty.
I'm going to share with you why I fully embrace the TSSUS decision to include individuals who present with a male phenotype. In fact, I applaud it. You don't have to agree with me, but I am hoping to put some perspective on this.
I have to start by sharing a letter, written by my mother, dated April 23rd, 1997. I have included a picture of the opening of this letter for you to see. Why is this significant? My insurance company denied my parents coverage of my growth hormone replacement therapy from 1994 to this time. They said it wasn't an approved treatment for Turner syndrome and that is indeed true in the US until 1996. Even then, you can see my mom had to fight for it. It was the dedication of many physicians and the TSSUS that finally got this treatment added as a recommended and necessary treatment for TS.
My parents paid out of pocket, thousands of dollars, so that I could have the treatment I so dearly needed. It took a huge community effort for things to change. I know there are many similar stories out there about struggling to get access to appropriate treatment. It's still hard, but things have gotten vastly better with more information and advocacy. It can continue to do so.
Now, what does this have to do with the latest changes? There is already information pointing to individuals with karyotypes that have abnormalities in the second sex chromosome and are phenotypic male have many of the same symptoms and needs as those already included in the TS umbrella.They benefit from the same care and treatment. By including them, we are opening doors for more research and better care.
How many of us in the community remember a time when there was little to no appropriate care and knowledge of what we traditionally think of as TS? What might have happened if we were ignored? There was a time treatment was a horrible struggle. Are we now going to gate keep access to support and care?
For those who are concerned about what this means for the rest of us and our womanhood and femininity. I will share my personal thoughts. Including this group of individuals does not change me. I am phenotypic female. I have breasts, a uterus, and I have a menstrual cycle just like any woman with two fully formed X chromosomes. I do not have ovaries and need replacement therapy for my hormones, but that doesn't make me much different than a post-menopausal woman. So, yes, I am female in gender (how I identify), and in appearance. Beyond that, I do not care if someone wants to say biologically I don't fit perfectly into the definition of the sex "female". They are right. I don't have two X chromosomes. It changes nothing about who I am outwardly or how I identify myself. This is how I personally perceive and process that part of things.
In closing, I support the TSSUS in including those with a male phenotype and abnormalities of the second X chromosome because, at one point, it was me who needed access and support and it was me who benefited from the advocacy of this community. I refuse to gate keep when I could be a part of showing compassion and support.