My time at the National Institutes of Health was very interesting and memorable last month. It has become the major highlight of my summer and something I will talk about when I am back on campus. I took part in the study because I wanted them to learn more about Kallmann Syndrome and it really means to have an Intersex/DSD (Disorders of Sexual Development) condition. It was very interesting that I learned so much that, they developed a protocol for when I want to have kids in the future and for my future medical treatments.
One of the many things I learned from NIH was the fact that, yes, I do have Kallmann syndrome and I have the much rarer variation of Kallmann syndrome called the KAL-1 Gene. It is one of the seven known variations of Kallmann syndrome, but according to the researchers at NIH, there are more out there that are awaiting to be discovered. I have the KAL-1 variation of Kallmann syndrome because of the micropenis and ambiguous genitals. The fact that I cannot smell anything at all. Even under an MRI, they do not see a pituitary gland in me as well. They learned because of the KAL-1 gene, that it is responsible for a whole host of problems that can affect me later down the road such as osteoporosis and major problems of the heart. They did looked at my kidneys to see if any were missing, but they were all their as well.
The nice thing they learned from NIH is that with Kallmann syndrome being a rare intersex/DSD condition. They are finding things that they could not be able to do in the previous decades. The new science coming out of NIH is constantly finding more variations of Kallmann Syndrome and very much every variation of every Intersex/DSD condition from Turners to Kallmann syndrome. That is why I am amazed that the level of science is getting better and better over time. I hope it leads to better diagnostics and better treatments in the future.
The one thing the researchers learned about me from NIH is that you cannot easily pin male or female intersex/DSD people. No matter how hard people may try to pin biological sex and social gender on intersex/DSD people or people like me. Medical science is always going to come back and say that is impossible. That is why the researchers at NIH and my medical doctors do not force biological sex and gender on me and instead leave me in the middle. They do not force the maleness or femaleness on me and instead let me be me or in plain English, my tomboy self. That is why they taught me not to stress or pressure me into a biological sex or gender because it would cause so many issues on my hormones and on my body. They instead, simply let me be myself and let me define me.
It’s why my doctors back home don’t always list me as either male or female because it would be too much for me and they simply just let me be myself. They do not force the male or female crap on me and instead just let me be me. It is why they do not want to stress me out and in many times, they treat me as a tomboy and a biological indeterminate person with Kallmann syndrome because they cannot scientifically pin male or female onto me.