Back in the 1970’s haemophilia patients were advised to avoid exercising to minimise the risk of bleeding. The consequences of limited physical activity such as obesity and loss of bone density were, however, quite damaging and in the long term caused more bleeds.
Today, five decades later, the tables have turned and physical activity is seen as an essential component of wellbeing for people with haemophilia and other bleeding disorders, and is being actively promoted for its benefits in terms of joint health, coordination, general fitness, body weight and self-esteem:
- Strong and flexible muscles provide better support to the joints, preventing bleeds and joint damage;
- Regular exercise boosts energy and reduces fatigue;
- Feeling fit greatly contributes to psychological wellbeing;
- Healthy body weight reduces the stress placed on the joints, thus reducing the risk of bleeds;
- Improved balance and coordination can help joints and muscles work better together, which again helps in reducing bleeds;
- Exercising in a group provides the feeling of normality and inclusion which is important for people with rare conditions.
To promote the importance of physical activity for people with bleeding disorders, the EHC launched its #thisway campaign, inspired by and continuing the BloodRelatives campaign of the Dutch Haemophilia Society in 2017. Between the launch of the campaign in July and EHC Conference in October 3,457 kilometers were tracked during the EHC 2018 #thisway campaign by everyone who took part in it.
Being a competitive bunch of people, we directly set out on a new challenge – #thisway to #EHC2019! At this point, we have almost tracked 200km in the four activities that have taken place! Unfortunately, this is far from enough as we would like to beat last year’s number! Join us #thisway to #EHC2019 and track the kilometers of your physical activity and submit the count to us to let us add to the overall number together as a community.
What’s more, if you would like to promote physical activity within your NMO, the EHC has something to offer.
Apply for EHC Physical Activity Grant and kick-off a physiotherapy or physical activity project in your NMO.
Find out more EHC Grants.