Hello, my name is Thomas Paris. I’m 42 years old and live in Paris, France. I was diagnosed with Fanconi anemia (FA) at age 24 with the FANCA mosaic mutation. Since childhood, I knew I was ill but didn’t know how ill until I was diagnosed with FA. I’m proud to say that I am one of the oldest people with FA in my country as well as the tallest man with FA in France, standing at 1.72m (5ft 6in).
I went through a bone marrow transplant (BMT) at 32 and have written two books to share my story. Because I didn’t know if I would survive the transplant, my first book really became my baby. The first book is about being diagnosed with bone marrow failure and about my transplant experience. After I finished this book, I shared it with family and friends so they could better understand what I experienced. My second book is a reflection about the graft-versus-host disease I struggled with following my BMT.
Since my transplant, I’ve had around 30 cancers – many of them on my head - and several surgeries. I’ve had cancer on my lip which required my stomatologist to construct a new lip. One of my worst cancers was anal cancer. It was painful for me to use the toilet and I ended up needing extensive surgery.
I also had a spot on my brain that was found to be non-cancerous following a biopsy. It did cause inflammation, however, making it impossible for me to walk and I spent three months in the hospital. I developed amnesia and had to write everything down to remember it. I also began not to remember people around me. Doctors used plasmapheresis (the removal, treatment, and return of blood plasma from and to the blood circulation) to try and cure me. Slowly, I partially recovered my ability to walk but I still cannot run, and I struggle to stay balanced.
Unfortunately, I couldn’t go back to work and my girlfriend at the time broke up with me because of my disability. I know that cancer will most likely return, but I’m keeping a positive attitude as I saw people in much worse situations around me in the hospital. I saw people confined to their beds and I knew I shouldn’t complain about my situation. Every time I have a biopsy, it hurts, but I also remind myself “no problem, I can get through this pain, the future will be better soon, and I will not suffer.”
I am passionate about traveling and I hope to be able to travel more in the future. I try to make the best out of hard situations. It is not always easy to do, but I realize that without all these things I’ve been through, I wouldn’t be the good man I am today. I’m more empathetic than before and more sensitive to other people’s problems. We all have unique life paths and obstacles to overcome. Sometimes we fall, but we also get up, heal ourselves and continue with life. Carrying FA on your back is a burden that is difficult to live with. FA hurts. It’s long and painful, but this pain is what makes us remember the parts of life worth living. The challenges we face make our lives rich and even transform them into an epic journey.