Sickle cell disease is an inherited condition that is caused by the mutation of the red blood cells. It manifests when the sickle cell trait/gene is passed on from both parents. It affects how oxygen is carried to the organs around the body, due to “sickling” as a result of the short lifespan of the healthy red blood cells in the bone marrow.
Sickling occurs when the red blood cells break down into a sickle shape. The broken down sickle-shaped red blood cells get stuck in tiny blood vessels, causing slow or blocked blood flow and oxygen; resulting in complications such as anaemia, pain crisis, and infections. Although sickle cell disorder is a serious and lifelong condition, careful long-term management can help alleviate many of the complications associated with it.
Sickle cell disease is not common and rare in some regions and countries like Australia, hence, many people are not aware of it.
Australian Sickle Cell Advocacy Inc (ASCA) is a patient advocacy group supporting the rights of people living with Sickle Cell Disease (SCD) as they navigate the healthcare system in Australia. ASCA is a non-profit organisation started in 2014 and officially registered in October 2018. An advocacy group formed to fill the gap of highlighting the rising numbers of sickle cell disease in Australia. Although rare in some part of the world like Australia, sickle cell disease is affecting a lot of people.