My Haemophilia Story

My Haemophilia Story consists of a collection of stories from people with haemophilia and carers, created to increase awareness among the public and healthcare professionals; while providing authentic and personal insights into the experiences, living and coping with haemophilia.

Many people with haemophilia are still living in pain, and/or with untreated psychological or psychiatric conditions. People are also facing challenges in adult relationships as well as issues with employment. We want to increase awareness of these issues, in order to improve care and inspire other people with haemophilia to overcome their own difficulties.

As a child, Michael was told about the importance of staying active and exercise to improve his joint health. This was a massive shock to young Michael and his mum, who always thought activity would lead to bruising pain! Tired of the joint bleeds, tired of the pain and tired of the hospital, Michael made the decision to make his life an active one, from basketball as a child to completing a doctorate in physical therapy.

Marianna’s son Martin was diagnosed with Haemophilia A at six months old after she woke up to find Martin bruised, lying in his own blood. From that moment forward, her life completely changed. With the help of a supportive healthcare team and the haemophilia community, Marianna armed herself with knowledge. She was determined to learn everything she could this disease that had suddenly appeared in their lives.

Stay tuned right here for more from these amazing people!

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