Haemophilia is a rare blood disease in Australia, and it is present in 1 in 6000 males (mostly!). Rare conditions are often misunderstood. Today is Rare Disease Day, and I am posting to support families affected by Haemophilia and all rare diseases. It can be a frightening and lonely journey, constantly having to advocate while in crisis and monitoring life. In Australia, we are fortunate to have exceptional Haematology teams and specialists supporting Bleeding Disorders. It is a small community but strong. Thank you to everyone who supports the Haemophilia Community in Australia. Here are some facts about Haemophilia; -Bleeding (‘bleeds’) can occur internally in any body part, including joints, muscles and organs, particularly after an injury or surgery. It can also happen without an apparent cause (sometimes called ‘spontaneous’). -Over time, repeated bleeding into joints and muscles can cause arthritis, chronic pain and disability. -Specialised treatment is needed to help blood clot normally. With appropriate treatment, haemophilia can be managed effectively. You can read more about Haemophilia here https://lnkd.in/g-tKQ6gs #rarediseaseday #haemophilia #haematology
Nat, the unwavering support you provide is inspirational 👏
Great post Nat, keep up the good work.
Head of Investments at WTW in Australia
10moGreat post Nat. As you mention, it is often the unseen long-term impacts on mental health of rare diseases such as haemophilia that can often get overlooked when you’re focused on the physical symptoms.