Update! Here’s what Brooklyn has to say about life recently: 

These days I have been doing an internship to be an Integration aid working with children and teens who have ADHD and/or autism. With all the HCU health-related issues, plus growing up knowing someone who is non-verbal, I can relate to this group on a unique level and hope this internship will soon bring me employment in this field. While it isn't an easy job, neither is the job of having HCU, but life is the ultimate teacher.  

If I could offer advice to the newly diagnosed and their parents, it would be to feel free to ask questions to your health team. With diet and formula, it's possible to lead a somewhat normal life where symptoms are lessened. They are lessened as a result of the treatment, and it's a reason to continue to follow the diet and be diligent about taking your formula. Any changes you wish to make to your body, such as increasing muscle, should be discussed with the team; same goes for if intervention is needed. As someone who was told to wait for scoliosis surgery even after I stopped growing, I wish I pushed for it when I was younger. 

According to what my doctors have told me and the lack of research that even my geneticist has not been able to find, I may be the first person with homocystinuria to ever be on GAHT (Gender Affirming Hormone Therapy) with positive elements. My metabolism has improved, and I have been able to increase my natural protein intake. I have been doing half a dose of testosterone weekly since Dec 2022 and have seen incredibly slow changes: voice change and fat redistribution while working closely with my doctors - my geneticist, endocrinologist, and internist. I also had to receive clearance from my cardiologist. Due to the hormones, I had to add an anticoagulant, which was the most unpleasant part of the experience. Doing bloodwork almost every month for the first 6 months, I feel it is a small price to pay to get me to my ultimate goal of presenting androgynous.  

As a child, I felt that my physical appearance didn't match my internal identity, and hearing phrases like "But you're a woman" gave me visceral reactions, which at the time I did not understand. Now, I'm sharing my story to encourage patients with HCU who have considered hormone therapy who were once discouraged, to have conversations with their doctors, without being deterred by concerns about blood clots. 

I'm excited to be attending HCU Network America's conference in Aurora, Colorado this summer. It'll be my first time attending, and I'm looking forward to meeting other HCU patients and their families.