Sickle Cell Disease patients need to be monitored routinely to treat symptoms due to the complications of the condition. Side effects differ between individuals and are managed differently. A team of different healthcare professionals work together collaboratively to monitor the symptoms as they occur, and management systems are put in place by interdisciplinary teams.
According to Kapoor, Sargam et al (2018), the treatment therapies currently available for SCD are red blood cell transfusion and Hydroxyurea. Hematopoietic stem cell or bone marrow transplant is curative, but there are a lot of barriers to this treatment option, including; lack of suitable donors, immunologic transplant rejection, long-term adverse effects, prognostic uncertainty, and poor end-organ function, which is especially problematic for older patients. Gene therapy to correct the gene mutation is under investigation as another curative option.
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.