A study recently published in the Orphanet Journal of Rare Diseases
concludes that, since people with hemophilia (PwH) often suffer from impaired motoric skills due to bleedings, sports therapy is helpful to better the reduced function.
For the last 18 years, sports therapy has been developed in the treatment of PwH, and since hemophilia is considered rare, other concepts than classical group therapy are necessary. The study, titled “Programmed Sports Therapy (PST) in People with Haemophilia (PwH) ‘Sports Therapy Model for Rare Diseases
’,” states that sports and exercise therapy can provide clinical benefit as a treatment option for rare diseases.
Because hematological, internal, orthopedic, and muscle skeletal issues are present in PwH, multidisciplinary treatments are required. To reduce the progression of the disease, appropriate therapies adapted to the necessities of PwH are applied. Particularly, physio- and sports therapy treatments should be associated with each other, the former in the acute phase immediately after a bleed, and the latter after the bleeding has completed.
According to a study published in the European journal Haemophilia
in 2013, more and more PwH participate in sports and other activities that require physical exercise. It has been proven that these activities, monitored by experienced sports therapists, can be considered an approved therapy for patients with rare diseases.
In the realm of sports medicine, five different basic motoric skills can be identified: strength, coordination, endurance, flexibility, and speed. These, except for speed, are of the utmost importance as it pertains to physical and psychological health. PwH are restricted in these areas.
“Most exercise interventions produced improvement in one or more of the measured outcomes including pain, range of motion, strength and walking tolerance,” the study’s authors stated. “Hydrotherapy may be more effective than land exercises for pain relief in adults. Functional exercises such as treadmill walking and partial weight bearing exercises seem to be more effective than static or short arc exercises for improving muscle strength”.
It is made clear in the study that advice for an appropriate kind of sports should be given, not only by physio- and/or sports therapists, but also by experts working in the haemostaseological and sports medicine/orthopedic field. Collectively, these experts can find the right type of physical activity for PwH.
The end game of implementing PST into the rare disease community is to enable patients, little by little, to manage their own training while still receiving support and supervision from an experienced team. Different exercises, obviously, should be adapted to the individual situation of PwH by type, used position, possible range of motion, frequency, duration, and intensity, while considering age, joint status, further diseases, and the availability of clotting factors.
One of the main takeaways from this study is that with this concept, it is possible to bring therapy to the patient, as opposed to patients having to travel to receive therapy.
The study’s authors note that sports therapy camps should be initiated 2-3 times each year for 3-4 days at a time, such to guarantee sufficient time for both education and training.
An exemplary one-year course, which includes two consecutive sports therapy camps together with home training, is shown in Figure 1.
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