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“For too long, people with haemophilia have been living their lives under the shadow of caution and compromise. Now, it’s time for liberation” says Philip Wood, the Head of Haemophilia at Sobi. Lean more, and read Erik’s story of life as a Liberator with Haemophilia A.
Haemophilia is a blood clotting disorder. When a person living with haemophilia bleeds, it takes longer than normal to stop. Those with severe haemophilia can bleed frequently and, often, for no apparent reason. Even a minor accident can have serious consequences, so caution is a constant necessity.
But Philip Wood, Head of Haemophilia of Sobi – an international biopharmaceutical company – says the dialogue around the treatment of haemophilia must be changed and that people living with the condition have the right to live their lives to the full.
People with haemophilia deserve to feel safe
Wood believes that, just like anybody else, people with haemophilia should have the right to pursue the opportunities they desire. He believes their treatment should allow them to feel safe, protect them from bleeds, have long-term joint health protection, and generally unburden them from their haemophilia.
Haemophilia can make daily activities a constant source of worry
In 2018, a groundbreaking, large-scale, pan-European ethnographic study exposed the unique challenges, aspirations and unmet needs, behaviours and perceptions related to life with haemophilia.
Most people with the condition live a far from normal life. Some face many medical challenges in their everyday lives and often act with great caution. They may make trade-offs on activity levels, fearful that bleeds will cause joint damage as they grow older.
But it doesn’t have to be this way
“We truly believe in the potential of the people we are dedicated to serving, so we have developed Liberate Life, a vision in partnership with everyone living with haemophilia, their family members and friends, and the professionals who care for them.” The vision celebrates real-life liberation stories of individuals living with haemophilia on their own personal journeys, letting their dreams and drive dictate what is possible.”
“By encouraging and motivating the haemophilia community – across the globe – to expect more from life and reach for the many possibilities that advances in care have made possible, we believe that, together, we can challenge the status quo of today’s haemophilia care,” says Wood.
Personalised protection can change lives
Treatment can be personalised to secure the level of protection that a person requires throughout their different life stages and endeavours. This is a paradigm shift; a fully personalised plan tailors treatments to an individual’s needs and wishes about how they want to live their life. The results can be both life-affirming and life-changing.
Erik’s haemophilia A often made him feel left out
Take Erik, for example, who has severe haemophilia A and, as a child, lived a different life to his friends. While he wanted to do everything that other people did, Erik was often left out if the risks were thought to be too great. “I sometimes felt neglected when I couldn’t participate,” he says.
Now, Erik has embraced the Liberate Life vision and is trekking Sweden’s highest mountain. “It’s important for me to show that, even though I have severe haemophilia A, I can overcome the same challenges as everyone else,” he says.
A right to live beyond your condition
Liberate Life means different things to different people. Not everyone with haemophilia wants to climb a mountain. They might decide to learn a language or a musical instrument, take dance classes, change their careers or aim to go for a walk more often. They can even find liberation by admitting to others that they have haemophilia.
But whatever they decide to do, people living with the condition should have the right to turn their dreams and ambitions into reality — and to live their lives beyond haemophilia.