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.

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.
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 hemophilia^6,10
- Factor activity: >5% to <40%*†
- Lifestyle: minor adjustments
- Activity: limited activity with some pain and risk of spontaneous or micro bleeds

Moderate hemophilia^6,10
- Factor activity: >1% to 5%*†
- Lifestyle: significant adjustments
- Activity: limited activity with some pain and risk of spontaneous or micro-bleeds

Severe hemophilia^6,10
- Factor activity: <1%*†
- Lifestyle: vulnerable
- Activity: high risk of spontaneous bleeds with low activity and pain with target joints

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 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.
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.
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.

Merry Christmas to all!

Laurie Kelley December 25, 2022

Christmas holiday banner with golden balls and spruce branches on dark background hannazasimova

God Bless Us Everyone… with Hemophilia

Laurie Kelley December 12, 2021

Doug and I saw a local live performance Friday night of Charles Dickens’ “A Christmas Carol.” It was wonderful! A classic story about a greedy old man who spends his whole life counting his money, living frugally and sharing his wealth with no one. The story is about his visit Christmas Eve by three ghosts: The Ghost of Christmas Past, Christmas Present and Christmas Future. Really four, if you include the ghost of Jacob Marley, his business partner in life, who first comes to warn him of the coming apparitions.

It’s a brillant story, and a metaphor for life. What is most important? Who do we most care about, and why? What will be our legacy when we die?

In the story, the Ghost of Christmas Present takes Scrooge to the house of his employee, the long-suffering Bob Cratchit, who has a son with a mysterious illness. The illness is never disclosed, but we see its symptoms: a crutch, crippling, limping, pain. And when shown the future, little “Tiny Tim” does not survive.

Every time I watch this now, I wonder: could Tiny Tim have had hemophilia?

It’s not far-fetched. In 1859, Tiny Tim inhabited London when Queen Victoria’s son Leopold did (born in 1853), and he had hemophilia. But Tim’s condition was never disclosed. He didn’t have a cough (denoting tuberculosis, common at the time), or any other pain.

I’m going to imagine he did have it; and thanks to Scrooge’s transformation to a benefactor, Tim got medical care, nutrition, support and grew up. Of course, they did not have commercial factor. But even Leopold lived to his early 30s without it.

*Tiny Tim narrates the story of A Christmas Carol at the North Shore Music Theater in Beverly, Massachusetts*

To those with hemophilia then and now, in the words of Tiny Tim, “God bless us, every one!” And happy holidays!

A Christmas Carol has never been out of print, and is one of the most enduring, powerful stories in English literature.

Inhibitor Summits are Coming!

Laurie Kelley March 17, 2014

I was present way back at the first ever inhibitor summit meetings, brainchild at the time of George McAvoy of Novo Nordisk, and funded by Novo Nordisk. Now run by National Hemophilia Foundation (NHF) with funding from Novo Nordisk, NHF is pleased to announce the 2014 Inhibitor Education Summits, designed to specifically cater to your inhibitor educational needs. Come join this dynamic event and interact with expert healthcare professionals as well as other patients and their families for a weekend of education designed to improve your overall health and quality of life.

The Summits provide:

• Travel and lodging financial assistance provided for eligible patients and their caregiver(s)

• Both locations accessible to wheelchairs and other mobility devices

• Four different educational tracks tailored to suit your needs as a patient or caregiver

• An Interactive Education Camp for Youths, including an off-site activity (Ages 4-12)

• Childcare for infants-3 years old

To learn more, contact NHF: 877-560-5833 or inhibitorsummits@hemophilia.org

or go to https://www.nhfinhibitorsummits.org/register.aspx

Great Book I Just Read

Minus 148 Degrees: First Winter Ascent of Mount McKinley

by Art Davidson [Kindle] (1969)

This is a classic in mountaineering books. Young, impetuous and even reckless climbers, all skilled, set out to “conquer” Denali in the first winter assualt. The mountain humbles them in ways too painful and detailed to spell out. It is an amazing testament to leadership, teamwork, lack thereof sometimes, hubris and human spirit. When a raging winter storm barrels in, only a snow cave stands between the climbers and death. With virtually no food, frost bitten, and disorientated, they wait out the storm in 148 degree below zero weather, and struggle back to freedom and go down in history. What kept them going? A fascinating read on a cold winter night. Four/Five stars.

Vacation in Wyoming

Laurie Kelley July 26, 2010

I’m on vacation this week in Jackson, Wyoming, one of the most beautiful spots in America; a real slice of the Wild West! I’ll be back next Sunday night!

A Christmas Carol