As more people living with bleeding disorders live longer our challenge is to find ways to add life to their years and rather than just years to their lives. People with bleeding disorders are now living long enough to experience the same range of age related conditions experienced by the rest of the population. Haemophilia Centres don’t have the resources or expertise to be a one-stop-shop for someone’s health needs. People with bleeding disorders are having to manage the relationship between a wide range of healthcare services.
Speakers offered practical suggestions such as planning early for ageing and staying active through regular exercise. The secret of maintaining mobility is to stay mobile – unfortunately that can be painful. Chronic pain was recognised as a major challenge; haemophilia has long being recognised as one of the most painful conditions in medical history.
It was noted that many people have fought their whole lives for their independence so can find it hard to ask for help. However, having a home assessment to see if modifications might be useful or getting a pharmacist to check all medication is still needed and aren’t contraindicated is sensible. Some people will also need help with maintaining a nutritious diet.
Veins are also a concern as many people worry about what will happen if they can’t treat themselves anymore. Similarly, would a residential or nursing home be able to cope with someone with a bleeding disorder? 60 years of prophylaxis equates to almost 7,000 injections. It is important to keep rotating injection sites to avoid developing hardened veins.
Haemophilia Scotland are very grateful to Baxter Healthcare UK for there generous support which enabled us to attend the WFH Congress in Melbourne.