It is important for individuals with bleeding disorders to participate in some form of physical activity. Being physically active helps to strengthen one’s muscles, bones and joints. One of the many benefits of having a strong healthy body can be a reduction in the number of bleeding episodes an individual might experience. Many in the bleeding disorders community are championing the effort to stay healthy and be physically active.
In this article, we introduce you to three such people: Trevor, a young adult male with von Willebrand Disease, Dawn, an adult woman who is a symptomatic carrier of Hemophilia A, and Barry, a forty-seven year old male with severe Hemophilia A. All of them have discovered a form of physical activity that is enjoyable and adaptable to their specific needs. They have all overcome obstacles along the way and are now using their voices to raise awareness about the benefits of physical activity and to motivate others to find their own activities to champion. Their stories are exciting and inspiring and are proof positive that you are never too young or too old to start your own story to a healthier you!
When & how did you become physically active?
Barry– I was never a particularly active person until I had a total knee replacement surgery in 1999 at the age of 34. My orthopedic surgeon had encouraged me to do a moderate amount of exercise both pre and post surgery to make the operation and rehabilitation more successful. Once the damaged joint had been replaced, I was able to do a lot more, which led to me taking up the sport of cycling in a much more serious way.
Dawn– In 2004, I turned 40. I knew I needed to get off the couch and do something, so I set my sights high and put my name into the lottery for the New York City Marathon. I ended up getting in but didn’t train properly and injured myself (I DID finish though). It took me four years after that to get the nerve up to enter again. In 2008 I entered again, and this time around trained properly, and finished without any injuries! I’ve never looked back.
Trevor– I became physically active around the age of 17. I was always stressed out from missing a lot of schoolwork from my constant nosebleeds and from the stress of my dad being diagnosed with cancer. For some reason, my solution to my stress problem was to start working out in the gym
Do you have some type of support system that encourages you to stay active? What, who, and how?
Barry– I’ve found that I accomplish a lot more when working out with others, so I make a point to ride competitively with local bike clubs, and I participate in quite a few organized charity rides which can be found in most parts of the country. I invariably work a lot harder when in the company of others and find a lot more motivation that way than when riding on my own.
Dawn– My family and friends have always supported my activities. They were all there at the finish line of my first 70.3 Ironman! By the time I finished the swim and bike portion, I was exhausted and really struggling. I considered quitting at the start of the run. My husband, Brad, knew I was having a hard time. He started walking with me and telling me to “trust my training.” By mile three, I was running and he never left my side. He came to take pictures and ended up running the half marathon with me. Now that’s support!
Trevor– For a while, my parents didn’t support my decisions simply because I chose health and fitness over my school work. Once I learned to balance both, my parents became my number one fans. To this day, I can always count on them to help me in any way they can, whether it’s encouraging me to infuse if I’m injured, or simply complimenting me on my dedication.
What does your regular fitness routine consist of? How do you manage your bleeding disorder while staying active?
Barry– At the moment, I’m averaging a little over 250 miles a week on the bike. One of the principal motivations for pushing this hard is to illustrate that neither HIV or hemophilia should limit what we think we can do, as long as we’re being wise about the choices we make.
Dawn– I try and run or get to the gym at least 5-6 days a week. Even if I walk around the track, I try my best to do something. Being a symptomatic carrier, I have heavy periods, and that can be a challenge during any long training run or marathon, but I’ve never it slow me down.
Trevor– My fitness routines are always changing and I normally change my plans every 4 weeks. I always make sure I work my full body in one week, and that I’m doing some form of cardio every day. I try to have at least one day of rest to help my joints and muscles recover after a week of hard work. Listening to your body is key.
What are some of the benefits of biking & being physically active?
Barry– In addition to the physical benefits, I think that being active really helps in terms of staying on top of the mental and spiritual stress that inevitably arises from managing all of the financial, psycho-social, and physical effects of living with multiple chronic medical conditions.
Dawn– I have more energy, feel better, and know there isn’t anything I can’t do! I’ve met some great people along the way who share the love of being active. It’s contagious.
Trevor– When I’m able to exercise regularly, my body is extremely energized. I never feel tired, and my sleep cycles are always consistent. Being physically active has actually helped me in every aspect of bleeding prevention.
What other things do you do to take care of yourself and stay healthy?
Barry– I like to think that maintaining a reasonable diet, working full-time, and keeping a good spiritual outlook, all contribute to keep everything going in the right direction.
Dawn– I drink lots of water throughout the day, have been a vegetarian for almost 7 years, and have always tired to eat healthy. However, after I finish a race, I treat myself to things like an entire box of Kraft macaroni and cheese! It’s all about balance.
Trevor– I focus on stretching and nutrition. Stretching every morning when I wake up, as well as after every workout has kept my joints loose and strong. Nutrition is the most important aspect of overall health.
Do you face any additional challenges because you are physically active? What happens if you exercise too much? What happens if you are inconsistent with your activity?
Barry– The best results are invariably achieved through consistent effort, so I always try to get on the bike as often as possible.
Dawn– I try and listen to my body, knowing when to take a break.
Trevor– When I first started exercising, I didn’t know much about proper nutrition and eventually trained myself to the point of being underweight, and I developed an eating disorder. I had to learn that being physically active also means being smart when it comes to food.
Would you encourage others with a bleeding disorder to become physically active? What words of wisdom/advice would you offer them?
Barry– Absolutely!! There is simply no reason, in the age of effective meds and access to prophy dosing, to think that people with a bleeding disorder cannot live active lives. Developing a sound exercise routine takes effort and should be done carefully and gradually, with the supervision of a physician. Comparing notes with other community members who’ve successfully integrated physical activity into their lives (and there are many) is another good way to stay motivated.
Dawn– YES! First, talk to your doctor and determine if you have any limitations. Once you know what you CAN do, get out there and just do it! It’s easy to convince yourself the weather is too cold or hot for a run, bike ride, or walk, but once you make the decision to get moving, you’ll feel amazing. Being outside is good for the soul as well! Physical activity keeps your muscles and joints strong. There’s nothing better than a healthy body and mind.
Trevor– In my opinion, being physically active every day is the best decision anybody with a blood disorder could make. My joints have become so much stronger and I don’t get nosebleeds unless I stop exercising. Most of the time, I feel like I don’t even have a blood disorder because I feel just as strong as any healthy individual my age. Health and fitness has become my natural cure to my VWD, and I don’t ever plan on quitting.
Barry Haarde is 47 years old, has severe hemophilia A, and lives and works in Houston, Texas. He serves on the boards of the Committee of Ten Thousand and the Lone Star Chapter. Barry has logged over 70,000 miles on a bicycle and frequently participates in charity fundraising rides for hemophilia and other organizations, including two coast-to-coast rides across America for Save One Life and HFA’s “Gears for Good” ride.
Dawn Evans is originally from Cleveland, Ohio, and currently lives in Ann Arbor, Michigan. She works for the Hemophilia Foundation of Michigan as the Special Events Coordinator. Her father had severe hemophilia A, she is a symptomatic carrier, and her 20 year old son, Dylan, is a college junior and is also affected with severe hemophilia A.
Trevor Dunn was diagnosed with von Willebrand disease type 1 & 2N at the age of 7. He is a counselor for the New England Hemophilia Association’s (NEHA) family camp and is passionate about health and fitness. He lives in Maine.