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Kristy - How a bleeding disorder has affected my life

Kristy Dobson is an 18-year-old competitive figure skater and York University student in Toronto. She also has von Willebrand disease. She shares her story about how the bleeding disorder has affected her life.

How a bleeding disorder has affected my life
by Kristy Dobson, Pickering, ON

Von Willebrand disease has had a big impact on my life. At a fairly young age, I found out that I had a bleeding disorder. It not only resulted in a major lifestyle change, but it also made it necessary for me to learn about the challenges that I would have ahead of me and I asked myself, “How am I going to deal with this?”

I am 18 years old and a competitive figure skater representing Canada. My bleeding disorder affects me every single day of my life. I train about 25 hours per week (15 on the ice and 10 off) and one day hope to represent Canada at the Olympic Winter Games. Once my skating career is done, I have aspirations to research better training methods for Canada’s athletes.

Competing in a sport at an elite level requires many hours of training and daily physical stress to the body, resulting in numerous injuries for someone with a bleeding disorder. For a person without a bleeding disorder, injuries such as a sprain or minor impact injury can heal within a week or so and they do not have to be concerned about what is going on inside their body. But for someone like me, a simple sprain can take weeks to months to fully recover and I always have to be concerned with what is happening inside.

Questions like: Could I be bleeding into the joint? Will I need a blood transfusion for blood loss? Do I need to inject myself with DDAVP? Do I need blood products? Should I go to the hospital now or should I wait and see how it goes? These decisions were all previously made by my parents and coaches, but now that I am an adult, I must make those decisions for myself. However, if I have a bleed from a head injury or something of the same severity, I am not in a position to make such decisions, so key people in my life have to be informed as to what to do in those circumstances.

For example, about two years ago I had an injury that could have ended my skating career. It started with a simple sprain to my ankle but within a very short period of time, I had bled severely into my joint. By the time I got to Sick Kids Hospital in Toronto and the decision was made to inject me with DDAVP, infection was setting in. The infection in the blood was very severe and the decision to operate and irrigate the joint had to be made. An operation would get rid of the excess blood and infection, but there was a risk of damage to the tendons. After weeks in the hospital and several IV blood meds, morphine and antibiotics, the infection finally started to respond and they did not need to operate. Months of rehab and medications, along with my great determination, got me back on the ice.

On a day-to-day basis, major problems can arise from the simplest of events. For example, just by bending my arm I can injure blood vessels or tissues and cause major internal bleeds. I have to be aware of any swelling or hot spots around joints and take any bruising very seriously, especially if it is unexplained. Minor cuts and scrapes to people may be minimal, but I almost always end up in the hospital getting stitches.

On a day-to-day basis, I must make sure that I have supplies of DDAVP at home and at the arena in case I injure myself. Since DDAVP must be stored at a certain temperature and in a fridge, I cannot carry it on my person so I must make sure that I can access it when needed. Wherever I go, I must have a plan for getting the DDAVP quickly. I have been taught by the Hemophilia Clinic at Sick Kids how to inject myself and I have taught my parents, skating coaches and other key people who will be able to help me in an emergency situation. It can be a tough call as to whether I need DDAVP or a hospital assessment first.

Along with a bleeding disorder, I have Ehlers Danlos Syndrome. Ehlers Danlos prevents my tissues from connecting properly. This also results in bleeds and severe bruising, as well as tendonitis because it also makes my body so flexible, and that causes rips in the tendons and therefore considerable bleeding.

I have had numerous injuries and daily occurrences that have always led me to the hospital for treatment, but I have learned to cope with and overcome my bleeding disorder.

- Fall 2008