My name is Steven Jackson and on December 5, 2022, I was diagnosed with acute myeloid leukemia (AML). After multiple rounds of chemotherapy, I had a stem cell transplant on June 16, 2023, from an unrelated unknown donor. I am beyond thankful for this gift; however, I developed graft-versus-host disease posttransplant and have suffered severe side effects since.

At first, I had a minor rash that was barely noticeable; this quickly turned into severe skin irritation and peeling to the point where I was losing skin on my hands and feet and couldn’t stand or walk, I could barely grip anything with my hands. My wife would have to push me in a wheelchair to get around and she would have to open drinks for me. It also gave me severe problems with my vision; I developed extreme light sensitivity and very dry eyes. I saw a retinal specialist at Vanderbilt University, Nashville, US, and they fitted me for scleral contact lenses. This has helped with the light sensitivity and dryness; however, I have to use the drops very frequently.

I was also given photopheresis, where my blood was circulated through UV light, regularly for around 4 months. This treatment was stopped temporarily when my symptoms improved; however, they soon returned and photopheresis began again. I have just completed what I hope to be my last photopheresis treatment. Over time, my skin also began to lose pigmentation in sections. The dermatology team has set me up with a phototherapy unit and I have started treatments to try and resolve this issue. It has been a long journey, but I have had a great team to help me fight!