Always Believe: Don’t let hemochromatosis stand in the way of your dreams!
Posted October 28th, 2016 by Canadian Hemochromatosis Society
By: Layne Sleeth
I was born with hemochromatosis, but I had no idea I had hemochromatosis until I was eleven years old. My parents thought it was an adult blood disorder, so it was a shock when Sick Kids told us that I needed to start treatment for it. I had never heard of hemochromatosis. I was just tired of feeling tired all the time and throwing up so much.
For years, my parents and I thought it was my stomach and that’s why I started going to the Gastroenterology clinic at Sick Kids in Toronto. The only thing the doctors could find wrong with me was my blood, which had high levels of ferritin and iron. I got transferred to the Hematology clinic where we met Dr. Melanie Kirby-Allen. The word hemochromatosis came up not too long into the conversation with Melanie. My parents were surprised, they had no idea hemochromatosis could affect kids. My dad said that he has relatives with hemochromatosis and my mom was not aware of any hemochromatosis in her family. Melanie had our family do DNA testing to see if hemochromatosis was the problem. A few weeks later the results came back that my parents are both carriers of the hemochromatosis gene. Of course, my brother’s results came back perfect! I on the other hand, was not so lucky. I had inherited both of my parent’s hemochromatosis genes which meant I had hemochromatosis. The next step was to perform a MRI on my liver to see if my liver was being affected from iron overload and if I needed to start phlebotomy treatments. The results came back and Dr. Kirby-Allen recommended that I start treating my hemochromatosis with phlebotomy treatments.
I play tennis competitively and all that I could think of was how my tennis would be affected by hemochromatosis. I had Under-12 Nationals in a few weeks and this was definitely not in my yearly plan! We scheduled my first phlebotomy for right after Nationals. I won Nationals which was very exciting (my mom was a little emotional with the uncertainty of how hemochromatosis would affect my life).
With the excitement of Nationals behind me, it was time to start my lifetime commitment to therapeutic phlebotomy treatments. My dad and I headed to Sick Kids for my first treatment and established a routine that we have been doing every 10-12 weeks for the past three years. He wakes me up at 6am and we head to Tim Hortons for a bagel and hot chocolate. We arrive thirty minutes early because my dad likes to be really early. At 8:30am, the phlebotomies are performed in the Haematology Day Hospital.
I have twelve percent of my blood removed (approximately 350ml.) and then receive 500ml of saline. This helps me recover faster. The whole process takes about three hours. In those three hours my dad and I chat and eat lots of cookies. I also watch Netflix. The health care workers are always very attentive and take great care of me! I look around the clinic at the other patients and realize how fortunate I am. Hemochromatosis is a blood disorder that with on-going phlebotomy treatments is very manageable and controllable. I see so many brave kids in the Sanders Cancer Day Unit which is right beside the Haematology Unit. I never complain about my hemochromatosis. Sometimes I feel a little dizzy or faint and my veins get sore but these affects are very minor compared to what most kids are going through.
I am fifteen now and have been receiving phlebotomy treatment for three years. I feel great! I have so much more energy and my stomach problems have really improved. I am so glad that I started the phlebotomy treatments because I know it is really helping me feel better and helping me to achieve my goals. This summer I won the under18 National Tennis Championships and I recently represented Canada in the Jr Fed Cup Tennis Championships in Hungary. Our team finished 5th in the world.
My dream is to be the best tennis player that I can be. I will not let hemochromatosis stop me from achieving my dreams. If you are a kid with hemochromatosis or if your parents have it and you are scared that you may be diagnosed with it, don’t be. Make phlebotomies part of your life and carry on and achieve your dreams! Don’t let hemochromatosis get in the way of you and your dreams!
I really appreciate the great care that I receive at Sick Kids Hospital! Thanks Melanie, Karen, and the great health care providers in the Haematology Unit.
*Editor’s note: When Layne was diagnosed, her ferritin level was over 300 ng/mL