Dr. Thomas Hilberg’s article focused on the importance of sports and other kinds of exercise in the treatment of people with hemophilia. And the article championed an exercise approach that the University of Wuppertal professor calls programmed sports therapy.
Before the development of clotting factors that could counter hemophilia bleeding episodes, doctors recommended that people with the disease limit their physical activity. The fear was that a sports injury would trigger bleeding.
Scientists have since concluded that inactivity can be more harmful than exercising in certain diseases, including hemophilia.
Hemophilia can damage the body. One manifestation of this is muscle weakness that can lead to joint damage. In addition, having to be immobile after a bleeding episode can contribute to loss of muscle tone and strength, and tendon atrophy.
Previous studies have shown that people with hemophilia have less muscular coordination and more balance problems than healthy people, whether or not they have joint damage.
Hilberg said physical rehabilitation after a hemophilia episode “should not only focus on the muscle atrophy after bleeding,” but also on what can happen from not using the body.
Exercise should be viewed as more than a way to keep active and have fun, but as a therapy component, he said. It can help people with hemophilia improve both their physical situation and mobility after a bleeding episode, he said.
Those who work with hemophilia patients have developed a concept called programmed sports therapy. It is designed to help patients manage their condition while giving them the benefits of sports therapy in a supervised environment.
Programmed sports therapy works toward five goals:
- Enhancing body awareness and coordination.
- Improving joint movement.
- Regulating muscle tone.
- Improving muscle strength and coordination.
- Increasing endurance.
The program combines work at sports therapy camps, including theoretical and practical training, with individual and group training at home or in fitness centers. Because people have different symptoms and disease manifestations, an exercise regimen needs to be personalized, Hilberg said.
He said the overarching goal is to “bring the training to the trainee and not the other way round.”
Hilberg has been involved in 35 sports therapy camps in Germany and Switzerland for 18 years. They “are helpful in the development of personal competence of people with hemophilia” and pose little risk of complications, he said.
Programmed sports training “can also be helpful in other rare diseases,” he added.