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I have hemophilia.

When I was a in school, my parents told me that I couldn’t play football, baseball, soccer, or other contact sports, because I was a “bleeder.” I always wondered growing up, what does being a bleeder even mean? All I knew was that I bruised easily and wasn’t going to die from a paper cut.

During gym, while my friends played basketball, I walked around the track contemplating why this condition was stopping me from doing things that I wanted to do. My classmates started calling me, “bubble boy.” I honestly couldn’t blame them, because that’s what I felt like: a young, fragile, broken child that everyone was constantly worried about. I started resenting that I had hemophilia and began hating my life.

Not being able to participate in physical activities caused me to become isolated. I fell into an abyss of depression, as I honestly did not know how to accept hemophilia as a part of my life. It wasn’t until I ventured off to college, that I realized the fact is I have hemophilia. The questions then became, How do I deal with this? and What do I do now?

Although I didn’t play contact sports as a child, there were still so many things I could have done, like swimming or hiking. But instead, I chose to focus on what I couldn’t do. When it comes to sports and exercise, there are so many things that you CAN DO with a bleeding disorder. I’ve learned that I can be active and take risks; I just have to be responsible when doing so.

For example, I alter my prophylaxis regimen when I am going to be the most active. If I am more active in the evening, I will take my dose right before I begin the activity, so that my factor levels are at their peak. If I find myself bleeding more after a week or two of doing the new activity, I will contact my doctor and discuss the possibility of increasing my dose.

A stronger and healthier body means less bleeding.

Starting a regular exercise program is the key to staying healthy, protecting your joints, and even decreasing bleeding. Getting physically fit doesn’t have to take a lot of time or cost a lot of money, and it can make a big difference in how you feel with your overall health. General wellness means striking a balance between eating healthy, staying physically fit, and managing your stress levels. These practical tips can help you jump-start any exercise program.

Tip #1: Stretching

A quality exercise program involves stretching before and after your primary activity. This gives you time to slowly warm up and cool down the body. Stretching can be as simple as breathing deeply as you hold poses, touching your toes (standing or seated), or doing deep lunges. Stretching and deep breathing can improve your flexibility, circulation, reduce stress, relieve soreness, and increase the strength of the muscles around joints.

Tip #2: Cardio Exercise

Moderate aerobic exercise is the heart of staying healthy (no pun intended!) Simple cardio exercises can include walking, swimming, bicycling, jogging, or dancing. It is recommended that adults aged 18-64 get at least 2 hours and 30 minutes of moderate intensity physical exercise each week.  That’s just over 20 minutes a day. Life gets busy, but it’s possible to find 20 minutes a day for your health. It can be as simple as taking the stairs instead of using the elevator, parking further away at the grocery store, or going for a walk during your lunch break. Be creative and incorporate exercise into your daily routine.

Remember: Pain is a warning sign, and could be the early indication of a bleed.

Tip #3: Nutrition

In order to have the energy to exercise and support an active lifestyle, you have to eat healthy. Eating well-balanced meals includes consuming fruits, vegetables, whole grains and low-fat dairy. The USDA serving size guidelines per day include: 6-11 softball sized servings of whole grains, 5-9 fist-size servings of fruit, 3 baseball sized servings of dairy, 2-3 deck of cards sizes of meat, and 5-6 teaspoon sized servings of fats. If you’re ordering out at a restaurant, choose baked, grilled, or steamed foods, instead of fried foods. Also, try to avoid soft drinks full of high fructose corn syrup and sugar, as well as desserts. However, it’s also ok to treat yourself from time to time.

Maintaining a Healthy Lifestyle

The key to starting an exercise routine is to find something you enjoy doing.  If it is spending time with your children, start a game of tag or shoot some hoops together.  If you crave a little quiet time, take a hike, work in the garden, or take a brisk walk with the dog. Feeling social? Take a water aerobics class, or bike or jog with a friend.  Choose activities that cause an increase in breathing and heart rate.  All of these activities count toward your goal of 150 minutes a week.

The key to sticking with it is to schedule activity time into your day.  You are much more likely to exercise if it is a planned activity in your schedule.  Remember, 20 to 25 minutes a day is all it takes to reach the 150-minute per week goal.

Other ideas to help you be successful are:

  1. Set simple, attainable goals. Write these goals down and put them somewhere that you will see them every day.
  2. Find someone to work out with.  Having an exercise partner will keep you accountable, and is a great way to give and get support.
  3. Log your activity.  Keep track of the days you exercise and for how long.  You will see how quickly the minutes add up and how attainable 150 minutes a week really is.

Last year, HFA launched an exciting new fitness campaign called Get in Gear –a free app that will track your fitness and workouts, which is available for download and use on Apple and Android mobile devices.  This app raises awareness about bleeding disorders while helping to improve your overall health. Simply choose from the seven activity categories, and the app will track your time and/or distance performing that activity.  It is that simple!  There is something for everyone on this app, and all levels of fitness are included. Join the more than 6,000 people that have downloaded it, and start your own path toward a healthier body and life today!

*As with any new activity, and especially if you are having joint or bleeding problems, make sure you check with your physician or physical therapist to be sure the activity you are planning to do is right for you.

Rich Pezzillo is the Communications Manager for HFA and Janet Chupka RN, BSN, is the Program Consultant for FitFactor. 

 

 

 

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