Exercise

5 things to know about hemophilia, factor activity, and exercise

Laurie Kelley February 5, 2023

Sponsored by Sanofi

With 2023 now under way, getting more exercise is probably on a lot of people’s minds. It’s a great time to make new plans to get moving! For people living with hemophilia, there are extra considerations to make sure you can safely participate in physical activities. Below are 5 things to know about exercising when you have hemophilia—and how factor activity levels play a role. Remember that you should always speak to your doctor before starting any new type of activity.

  1. Exercise is important for people living with hemophilia. Engaging in physical activity is associated with both physical and mental health benefits1—and that goes for people who have hemophilia, too. In fact, exercising can improve joint health and reduce joint bleeds.2 Hemophilia severity, factor activity, and other personal health considerations may all affect what kinds of exercises you and your doctor decide are the best fit for you.
  2. Factor activity levels determine hemophilia severity. Your factor activity level is how much clotting factor you have in your blood at a given time. These levels are used to help determine how severe your hemophilia is at the time of diagnosis.3 Higher factor levels in your body over time means better bleed protection. Factor activity levels and severity may affect the amount of risk that comes with certain forms of exercise.4
    • Categories of hemophilia severity and how they affect lifestyle,
      • Normal (non-hemophilia range)5, 6, 7, 8, 9
      • Factor activity: 50% to 150%*†
      • Lifestyle: normal
      • Activity: High impact activity possible with no pain
    • Near normal (non-hemophilia range)
      • Factor activity: >40% to <50%*†
      • Factor activity levels between 40-50 percent are currently undefined by World Federation of Hemophilia guidelines
      • Mild hemophilia6,10
      • Factor activity: >5% to <40%*†
      • Lifestyle: minor adjustments
      • Activity: limited activity with some pain and risk of spontaneous or micro bleeds
      Moderate hemophilia6,10
      • Factor activity: >1% to 5%*†
      • Lifestyle: significant adjustments
      • Activity: limited activity with some pain and risk of spontaneous or micro-bleeds
    • Severe hemophilia6,10
      • Factor activity: <1%*†
      • Lifestyle: vulnerable
      • Activity: high risk of spontaneous bleeds with low activity and pain with target joints
  3. Keep your hemophilia severity in mind when choosing types and levels of exercise. There are all kinds of ways to get exercise, depending on your hemophilia severity, your preferences, and your doctor’s recommendations. For example, people with moderate hemophilia may be better off with lower risk activities such as swimming, walking, or stationary biking.11 People with mild hemophilia may be able to participate in activities with more moderate risk, like weight lifting, hiking, rowing, or snorkeling.11
  4. There are also many ways to get exercise that aren’t the recreational activities that might immediately come to mind. Everyday activities like gardening or cooking are good ways to move your body and be productive at the same time.12 While there are many benefits to exercise and many ways to get active, no activity is completely risk free. Work with your doctor to choose the best kind of exercise for you.
  5. Treatment may affect factor activity and lifestyle. When your factor levels stay above 40% (in the near-normal to normal non-hemophilia range), you may be able to engage in activities longer.7,8,9 This is why many people look for treatments that improve bleed protection to allow them to spend more time doing the activities they enjoy. You may want to talk to your doctor about what your treatment is doing for your factor activity levels and how that may impact your lifestyle.
  6. Every person is unique. No two people living with hemophilia are identical. There are differences between hemophilia A and B, everybody’s factor activity levels are different, and everyone’s body reacts differently to exercise. Talk to your doctor to explore the options that are right for you. No matter what you decide together, it’s a great time to start the conversation.

To learn more, visit Levels Matter, a Sanofi website dedicated to helping people understand factor activity levels, how blood clots, how hemophilia is inherited, and more. The more you know, the better you will be equipped to make the right decisions for your lifestyle.

*Severity classifications may be different for women with hemophilia
†Factor levels may not reflect bleeding patterns

REFERENCES

  1. Centers for Disease Control and Prevention. Benefits of physical activity.
    https://www.cdc.gov/physicalactivity/basics/pa-health/index.htm.
  2. Harris S, Boggio LN. Exercise may decrease further destruction in the adult haemophilic joint.
    Haemophilia. 2006;12(3):237-240. doi:10.1111/j.1365-2516.2006.01214.x
  3. Centers for Disease Control and Prevention. What is hemophilia
    https://www.cdc.gov/ncbddd/hemophilia/facts.html.
  4. World Federation of Hemophilia. WFH guidelines for the management of hemophilia.
    https://www1.wfh.org/publications/files/pdf-1863.pdf.
  5. National Hemophilia Foundation. Hemophilia A.
    https://www.hemophilia.org/bleeding-disorders-a-z/types/hemophilia-a.
  6. Martin AP, Burke T, Asghar S, Noone D, Pedra G, O’Hara J. Understanding minimum and ideal factor levels for participation in physical activities by people with haemophilia: An expert elicitation exercise.
    Haemophilia. 2020;26(4):711-717. doi:10.1111/hae.13985
  7. Iorio A, Iserman E, Blanchette V, et al. Target plasma factor levels for personalized treatment in haemophilia: a Delphi consensus statement. Haemophilia. 2017;23(3):e170-e179.doi:10.1111/hae.13215
  8. Skinner MW, Nugent D, Wilton P, et al. Achieving the unimaginable: Health equity in haemophilia. Haemophilia. 2020;26(1):17-24. doi:10.1111/hae.13862
  9. Weyand AC, Pipe SW. New therapies for hemophilia. Blood. 2019;133(5):389-398. doi:10.1182/blood-2018-08-872291
  10. Centers for Disease Control and Prevention. Diagnosis of hemophilia.
    https://www.cdc.gov/ncbddd/hemophilia/diagnosis.html.
  11. National Hemophilia Foundation. Playing it safe.
    https://stepsforliving.hemophilia.org/sites/default/files/playing-it-safe.pdf#overlay-context=resources/physical-activity.
  12. World Federation of Hemophilia. Psychosocial Care for People with Hemophilia.
    https://www1.wfh.org/publication/files/pdf-1198.pdf.

Does Hemophilia Mean Brittle Bones? Part 2

Laurie Kelley September 25, 2022

By Paul Clement

In part one of this two-part series on bone health, we discussed osteoporosis and how it causes bones to become weak and brittle. We also reviewed some risk factors for developing osteoporosis—and having a bleeding disorder is a risk factor for developing osteoporosis. But just because you have bleeding disorder does not mean you are destined to develop osteoporosis—you can do many things to lower the risk of developing osteoporosis or to lessen its severity.1

Front view of a leg bone with cut section showing bone marrow.

So, what can you do? First, if you smoke, stop! If you drink several alcoholic beverages or three or more cola soft drinks a day, reduce your consumption of these beverages. Eat a healthy diet containing adequate amounts of calcium and vitamin D. (Many people are deficient in vitamin D, which helps the body absorb and retain calcium and phosphorus. Check online for daily calcium and vitamin D requirements and recommended foods). And exercise!

Bone growth changes in response to stress and strain applied to the bones. If you are sedentary, such as sitting around all day or sitting in an office, your bones are not subjected to regular mechanical stress. So the remodeling process tilts towards resorption and bone loss occurs. The opposite is also true. When bones are subjected to regular stress or mechanical loading, such as when walking or running, then over time, the remodeling process tilts towards new bone formation, which keeps your bones healthy and can help prevent, delay, or reduce the severity of osteoporosis.

Exercise is key! Healthy lifestyle choices are important, but they alone cannot prevent osteoporosis unless you add exercise. And not just any exercise routine—although swimming and bicycling tone muscles and provide a great cardio workout and are often recommended for people with hemophilia, they do not stress the bones sufficiently to promote new bone formation. To develop and maintain healthy bones you need to engage in regular weight-bearing exercise, such as brisk walking, dancing, aerobics, stair climbing or jogging as well as resistance exercises such as light weight lifting or use of elastic bands. (Resistance exercises are especially important for bones of the upper body, including the arms and shoulders.) Note that higher-impact weight-bearing activities, such as brisk walking or jogging, provide more benefit to bone health than lower-impact activities, such as a leisurely stroll. And although exercise is crucial in maintaining bone health throughout your lifetime, the greatest benefit is seen in childhood through age 20, when the skeleton is more responsive to exercise than in adulthood and old age, when bones become less sensitive to exercise. Greater bone strength when you are young pays lifetime benefits in the form of greater bone strength over a lifetime.

So, if you have a teenager who likes to watch TV or play video games for hours on end, get them outside and exercising. If they don’t play sports, give them chores that make them walk or carry things. Walking the dog works! Their bones will thank you!

Of course, if you have not engaged in any exercise for a while or have painful joints, you should discuss your health status with your healthcare provider before starting any new exercise program. A physical therapist associated with a hemophilia treatment center is an excellent resource to help you get started.

  1. There are no outward signs that you have osteoporosis—until you break a bone. The U.S. Preventive Services Task Force recommends screening for osteoporosis in women 65 years or older and men age 70 years and older, and anyone who has broken a bone after age 50 years. However, if you have hemophilia, you may already be on the path to osteoporosis in your 30s. Because of this, it is often recommended that people with hemophilia have a bone density scan earlier rather than later. (A bone density scan is a simple and fast procedure which measures bone mineral density using a special type of X-ray scan called dual energy X-ray absorptiometry, or DEXA scan.)

Countdown: Three Weeks

Laurie Kelley July 18, 2011


Three weeks from today I will be settling into a sleeping bag on Mt. Kilimanjaro, gazing at what I think will be a billion stars overhead. But… back to today. I was supposed to go back to Mt. Washington to hike again, but the Auto Road was closed and… it’s a long way to drive up and back–about 6 hours that I don’t have right now.

But training continues!

I dusted off my Orbea Diva racing bike and took it for a 12 mile bike ride, thinking of Barry Haarde and thanking him for reigniting my love of cycling this year. Quite frankly, I am afraid of my bike. I’m used to the heavier hybrids, where you can really pump hard and fast, standing up even. But this thing.. it weighs about 13 pounds, is light and super fast, but moves when you do. The bike was shaking for 10 minutes when I realized it just feels every vibration in me. It has clip-in pedals, which also takes some getting used to. I survived and really enjoyed it!

My trainer, however, says the bike isn’t enough. Not enough cardio. Ten minutes with my trainer and I feel my heart bursting and pounding, just like it did on Mt. Washington. I see him twice a week and it’s made a huge difference. Dan suggested I increase the incline on my treadmill (what a concept! I’ve had it for years but never do that!), throw a ten pound weight on my back, lace up my boots and walk it. Sounds easy, but within 10 minutes, I was sweating and got the heart pounding again. This is a good thing. Eventually, someday, it will get easy. But not really before Kili.

As important as the training is what I am eating. Previously, I had fallen into a pattern of carbs, carbs, carbs, which gives me lots of energy. But also gives me points in the day when I am totally depleted. I’ve switched to a high protein diet, with minimum carbs. It was kind of hard at first, but now I am slowly losing my cravings for any carbs. This is great because not craving them allows you to think about what you are to eat, not just react. The protein helps repair the muscle tears (plenty of those) and carbs give you energy. This past week I ate so few carbs I found myself really depleted. After an hour with Dan, I went to run 4 miles, made it 2.5 and crawled the rest of the way home!

I am mostly vegetarian, and never eat red meat. No longer. All the working out has raised my energy levels, and I feel like a machine churning away calories! It seems I can’t eat enough, but I am slowly losing weight.

The treadmill says I burned off about 400 calories; how much could one little s’more that night cost?

Seriously, I’m learning so much about eating right, and exercising for maximum effect. If you want to learn about being fit, getting fit and raising your standard of life, check out Bayer’s Living Fit program that might be of help to you.

On Saturday I went shopping at REI and bought sleeping bags, day packs… a ton of stuff you need for six days on the mountain. We will start in tropical weather and end (hopefully) in winter weather with the temperature dropping to the 20 degree mark! It’s really getting exciting, now that the big day is coming!

Consider a sponsorship! I still need to raise more money. Go to www.saveonelife.net and click on Donate Now. Then click Kilimanjaro and follow the directions. Let’s raise it for Africa! Asante Sana!

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