30 Years of Living with FA

My name is Tahara Jackson, but my legal name is Robert Jackson. I’m a 30-year-old transgender woman living with Fanconi anemia and oral squamous cell carcinoma.

My FA journey started in Toronto when I was a child. I was diagnosed with Fanconi anemia and had total body radiation, chemotherapy, and had a bone marrow transplant (BMT) at Sick Kids hospital in Toronto, Canada. The next step was to deal with the glaucoma that I developed. I was fortunate to find a good glaucoma specialist who ended up performing laser eye surgery to help reduce the pressure inside my eyes.

My teenage years were filled with drugs and alcohol as I tried to come to terms with the life expectancy for someone with FA at that time: 30 years old. To this day, I still have issues with this perceived timeline.

I have undergone many surgeries and procedures throughout my lifetime, including a lower mandibulectomy to remove my first bout of oral cancer. It never gets easier to deal with cancer, but with time, I feel like I’m handling it a lot better. I’ve had cancer three times in my 30 years on this Earth and am actively trying to love life again.

I didn’t participate in any FA groups for a long time. If anything, I tried to run from the diagnosis, but I obviously could not. I feel like I’m on the better side of FA now. My journey started out rough with the BMT and long-standing mental health issues. Yet I am still here – just missing a few parts. I was 27 when I first went to a Fanconi Anemia Research Fund (FARF) meeting. I loved it even though it was overwhelming. The FA group wasn’t a big part of my life growing up because my parents didn’t want me to grow up worrying about anything FA-related. Having the FARF team and community with me now has been wonderful and I am very happy to meet all these people.

Tahara with her dog, Rockie

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