This week, with the paralympics underway (#greatnessisrare), it is timely that a recent article in the Orphanet Journal of Rare Diseases highlights the benefits (and challenges) of exercise therapy for people with chronic conditions. The article is by Thomas Hilberg, MD, PhD, of the Department of Sports Medicine at the University of Wuppertal in Germany who also hosts a ‘sports camp’ for people with hemophilia.  Hilberg believes that the principles used in his hemophilia sports camp can be  used to help people with many other rare or chronic conditions.

As many of our audience members are aware, having a chronic condition can make exercise and sports challenging. As Hilberg notes in his article, hemophilia patients have reduced motor skills, muscle strength, flexibility, and overall endurance.  All factors that can further atrophy with underuse—especially with a hemophilia patient who is nervous about doing any exercise activity that will put them at risk for bleeding.

To overcome this catch-22, an exercise program was developed over the past 18 years by Dr. Hilberg that takes into account the hemophilia patients’ limitations while also addressing ways to keep them active so that they can live longer and healthier lives.

Their program can be found here and while empirical data from this specific type of intervention is limited, common sense would say that providing ‘camps’ where people with chronic or rare conditions can learn proper techniques to exercise without risking further damage would be a program that many in Canada could benefit from. In Hilberg’s camps, hemophilia patients go for 3 or 4 days to learn the exercises best suited for their age, disease severity, and overall health. And that exercise program is designed so that the people can continue to use those exercises when they return home.

If anyone knows of such an exercise program or camp in Canada, please let us know and we will be happy to highlight in a future article.

Reference

Hilberg  T. Programmed Sports Therapy (PST) in People with Haemophilia (PwH) “Sports Therapy Model for Rare Diseases”. Orphanet J  Rare Dis. 201813:38 doi.org/10.1186/s13023-018-0777-7