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Living with haemophilia

Haemophilia is a lifelong disease but with proper treatment and self-care, most people with haemophilia can maintain an active lifestyle.

Factor replacement therapy is an essential part of its management. Help yourself continue to take an active role in your treatment by keeping informed. Don't be afraid to ask your doctor questions about haemophilia or your treatment. You can also use books, magazines and online resources to learn more about haemophilia and stay up-to-date on new developments. Learn as much as you can about your condition. While living with haemophilia can be a challenge, knowing more about your condition and treatment will give you better control over your condition and your life.

Keeping active is also a vital part of your haemophilia management. Maintaining fitness and keeping joints and muscles healthy is an important goal for someone with haemophilia.

Clotting factor replacement therapy can stop or even prevent bleeds but it cannot restore joint and muscle function after a bleed occurs. Regular exercise can help protect joints by increasing the size and power of muscles and strengthening tissues around the joints so they can cope much better with everyday stresses and strains.

Stronger muscles offer better joint support and this, in turn, can reduce the risk of bleeding. Exercise is also important for general health, fitness and self-esteem.

However, it is also important that any physical activity that is carried out does not cause a bleed or exacerbate previous problems or injuries. It’s about finding something that is right for you. Your healthcare team is available for advice and guidance.

Alex Dowsett

Competing at a world class level for professional cycling team, Movistar, Alex Dowsett is one of Britain’s most talented cyclists.

Alex has severe haemophilia, yet despite this, he has achieved huge success in his cycling career to date, most recently breaking the World Record on 2 May 2015 for the furthest distance ever cycled in an hour. In addition to this Alex became the Commonwealth Games Champion in 2014, winning gold in the Individual Time Trial and has also achieved success in major European time trials, including at the Giro D’Italia in 2013 where he beat Bradley Wiggins.

Alex is passionate about the Miles for Haemophilia campaign and his continued commitment to supporting people suffering from haemophilia extends to his work with several haemophilia charities around the UK. His enormous success in cycling has been, and continues to be, an inspiration for the haemophilia community. Alex’s continued promotion of sport and exercise, along with his guidance for young patients continues to provide hope and support for haemophilia patients and their families. He is a role model for young haemophilia sufferers worldwide and will inspire them to achieve their personal best, in whatever way they can.

The 2015 campaign has now closed, please check back in 2016.

Alex Dowsett's commentary

18:29 - 01 May

First pledge

On Saturday 2nd May I'll be pledging my #PersonalBest to help raise awareness of haemophilia

09:00 - 06 Jul

A big thank you from Le Tour de France