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.
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
