What the heck is XLP?!
Ever heard of XLP? Are you currently thinking what the heck is that? Then you're in the same as most other people.. XLP is called an orphan disease as it is rarer then rare. XLP is a illness that effects 1 in a 1,000,000 men. I hope that while reading this, you will come to understand how this has has affected my life.
Get ready for some heavy medical mumbo jumbo. XLP is a genetic disorder that affects the body's T cells. The role of these cells are to offer the body's first line of defense against an infection. Having XLP means that a very regular bacterial or viral infection is a major threat. Mono, for example, is fatal to males with XLP.(end of medical mumbo jumbo).
The standard treatment for this illness is a Bone Marrow Transplant (BMT). I had mine on January 17th 2002, at the age of 6. My donor for this BMT was my little brother, he was only 4 years old at the time. The procedure for a BMT is, that your own immune system gets killed off with chemotherapy drugs, so that your body can accept the donor bone marrow. During this time, I had tubes coming out of places that tubes shouldn't come out of. For the duration of this treatment, I was in an isolation room and i was not allowed out of my bed, and was only allowed visitors in surgery masks and gowns. The entire treatment took 1 month and I didn't leave the hospital for several months after that. Unfortunately, the transplant didn't go entirely as planned due to a drug miscalculation. That means that I am considered a "mini transplant" patient. This means I have become a human guinea pig for protective levels for XLP patients. After this I would still go to the hospital for regular check ups on a regular basis.
Ever since the transplant, I've been going for regular doctor visits with my immunologist. Even now, 16 years later, I go in once a year to have all of the important tests performed, as well as seeing other specialist throughout the year. As a child, I didn't fully understand what it meant to have XLP, but for me, this whole scary ordeal really started when my mom finally told me what XLP was. I think I would have been twelve, on one of our regular drives home from the hospital, when I asked what all of the medical terms really meant. She told me on that car ride home everything about XLP and also how I didn't receive a full dose of one of the chemo drugs. The memory of this moment in my life is burned into my brain, when I close my eyes and think about it I can still hear my mom and see the scenario around me on that drive home. To this day, I feel that XLP still affects my daily life in a variety of ways: I am always conscious of sick people who are around me, as they may be contagious. A good example of this was during the swine flu outbreak a few years back, as I couldn't go to school for a few weeks, because we had no idea how my immune system would be affected if I caught it. Additionally, I also face a large amount of uncertainty, as most doctors know very little about XLP and because I received a mini-transplant instead of a full transplant, nobody knows the future of my illness and any further trajectory it could take. This is mentally taxing, because I do worry about the future and what it holds. However, at the same time, it is also really cool, because I am pioneering everything that is currently taking place with my health and this treatment.
The reality of this special case has led to me living my life in a way of utter appreciation for being alive and wanting to live life to the fullest. I have had the privilege of competing internationally with team Canada in Sprint canoe with a great C-2 partner (tandem canoe). I also had the chance of demonstrating Canada's national sprint canoe the war canoe at the 2012 Olympic summer games in London.
My current goals for my life include bringing awareness to this rare disease, and to find other people to talk with, who have experienced XLP. I also hope to show others struggling with XLP or any other rare diseases, that there is hope at the end of the tunnel: that you can do a lot more than people would suspect of someone who went through so much medically.
If you wish to follow my story further or learn more follow me on Instagram @my_xlp_story or go to my personal website https://xlpandaaron.com/a-brief-introduction/. There will be links going up soon for further information on XLP on this site.