Steve's Story

In 2019, Steve had some routine blood tests and was called that evening to say he needed to go into hospital immediately. He was diagnosed with Aplastic Anaemia which is a type of bone marrow failure which affects all blood cells, but is most damaging to white blood cells, so it results in your immune system being compromised. Steve was also diagnosed with a secondary condition, Paroxysmal nocturnal haemoglobinuria (PNH), in which your red blood cells are attacked and become increasingly less effective at transporting oxygen around your body. This is a one in a million diagnosis. Steve feels lucky that his case was relatively mild and although a bone marrow transplant is the only cure, the condition can be effectively managed with infusions which he has on a regular basis. He does know, however, that one day he may need to have a bone marrow transplant and unfortunately for him he cannot find a match within his family or on the worldwide register. 

Steve is currently in his 40’s and he worked in retail until COVID hit. Due to his immune system being compromised, Steve now has to work from home. His company was extremely supportive in enabling him to change the way he works and he has managed to set up a very successful web based sales team. He lives with his partner, Katy,  who works in the arts sector and is also a successful author of young adult fiction. Steve loves walking and together with Katy, they enjoy the arts including plays and contemporary exhibitions.

From his experience through his diagnosis and treatment, Steve feels one area that needs more attention is the need for more mental health support for people in his situation. Following his traumatic diagnosis, Steve felt, at the time, there was limited availability to connect with a psychologist. He also had  to do a lot of research and advocate for himself. Luckily, Steve knew his way around the medical system and so knew what to ask, who to seek out and when to do this, so he really feels for people who do not have this knowledge and ability. 

Overall, Steve has really appreciated and is thankful for his care and treatment. He has formed bonds with the other patients who have a similar diagnosis and also some of the amazing staff who work at the Royal Melbourne. However, Steve and his family have realised there is a lot of work to do to build up our Australian Bone Marrow Donor Registry (ABMDR) and that is why they reached out to AMM and agreed to share Steve’s story. It  illustrates that there is still a growing need for people like Steve (and Steve himself!) to find a match within the ABMDR for their treatment. If you think you could help please sign up to register here or sign this petition to reinstate the swab program within Australia.