Signs and symptoms of Sickle Cell Disease vary in terms of manifestation, age and they change over a period of time. These can start from a younger age although the manifestation age also varies between children. If the risk of having the sickle cell disease was known during gestation or at birth, the symptoms are few or non-existent if treatment is started early. The symptoms usually start at around five to six months of age. Children’s symptom manifestation is delayed because babies are born with the fatal haemoglobin which is not affected by sickled cells as this haemoglobin does not sickle. The infant’s fatal haemoglobin is replaced by sickling haemoglobin after about 5 to 6 months of age.

The symptoms differ between individuals and the most common are:

  • Pain episodes
  • Infections
  • Anaemia
  • Priapism
  • Strokes
  • Leg ulcers
  • Gall stones
  • Kidney or urinary problems
  • Splenic sequestration
  • Hand-foot syndrome

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.