Preview Mode Links will not work in preview mode

Jun 9, 2020

Sickle cell disease (SCD) is a chronic vascular disease, with a range of acute and chronic complications driven by ongoing vaso-occlusion. The diverse clinical manifestations of SCD can affect organs throughout the body. The self-perpetuating cycle of vaso-occlusion and vaso-occlusive crises (VOCs) may account for the majority of the burden of SCD. 



My name is Agnes, co-founder and Executive Director for ASCA.

Our baby girl Joy had sickle cell disease (SS). She was born at King Edward Memorial Hospital in Perth late 2000s. At the time, my husband and I were unaware that we carried the sickle cell trait until she was diagnosed at 14 months old. We have three other children who do not have this condition. The warning signs were present during my pregnancy with Joy when I became very sick requiring admission to the intensive care unit for over two weeks. I was in the hospital for almost two months without a conclusive diagnosis and was only treated with steroids, different vitamins, and trial & error antibiotics to treat what seemed like sickle cell crisis symptoms. Even though the hospital detected that I had the sickle cell trait, they didn’t go further to test my husband to rule out the possibility of our daughter having the sickle cell disease. I should mention however, that, King Edwards hospital has now put guidelines to manage mothers and at-risk babies by doing sickle cell pre-natal testing.