Personal stories Living with a blood disorder John's Story John was born in 1949 with severe Haemophilia A – a genetic deficiency in blood clotting Factor VIII. Until he was 20, there was no treatment available for his condition and John experienced long hospital stays in acute pain caused by bleeding into his joints, which at times would make his knees double in size. Most doctors who saw John in those early days had never examined a haemophiliac before and their efforts to examine, compress and flex his knees would often make the bleeding worse. “I remember the numerous times doctors would prick one of my fingers to see how long it would bleed for. Thank goodness those days are long gone” John John first met Professor Ross Baker about 25 years ago when Professor Baker was a resident haematologist at Royal Perth Hospital. Professor Baker managed John’s treatment plans, including sourcing sufficient Factor VIII blood clotting protein to enable John to have two major surgeries to replace both his knee joints. Approximately three years ago, Professor Baker invited John to participate in a clinical trial to test a new, longer-lasting Factor VIII replacement product. With three grandchildren who also have severe Haemophilia A, John was committed to participating in any trial that could potentially lead to life-changing treatments for them. Although John benefited from this treatment, and tolerated it very well, he continued to have multiple bleeding events each year, some of a serious nature. In 2017, John participated in another clinical trial with a novel investigational agent designed to mimic (instead of replace) the missing function of Factor VIII. This agent has since gone on to be approved by the Therapeutic Goods Administration in Australia. “For the first time in over 50 years, I have had no bleeding issues – not even a bruise. Being able to participate in Perth Blood Institute’s clinical trial program has literally changed my life” John Today John is enjoying a more normal lifestyle, including the confidence to be more active and engage in activities he never previously pursued. Significantly, he is hopeful his grandchildren will also benefit from the ground-breaking research and treatment options which he, in conjunction with PBI, has helped to pioneer.