You can only understand someone’s situation if you have walked in their shoes. I say this all the time about people living with sickle cell disease. I’m a strong advocate for all things better for people living with sickle cell disease, however, I also emphasise that I have never walked in their shoes and even then every person’s experience is different. My experience as a caregiver for a child with sickle cell disease was the most difficult thing and depressing experience I had to deal with. The first few years were filled with guilt and depression, but as years went on, I accepted the situation mainly through sharing our experience with others. Later on, I channeled those thoughts to supporting others.

Sickle Cell Disease (SCD)  is a blood genetic disorder but only found out that I was affected in my 30s. SCD  results in abnormal haemoglobin – the oxygen-carrying protein found in red blood cells – giving the blood cell a rigid, sticky, sickle-like shape that hinders its oxygen-binding properties. For someone living with sickle cell disease, their red blood cells lasts for about 20 days before they get deformed, while someone with healthy red bloods cells, theirs will last about 120 before they are replaced in the bone marrow.

In late 2009, we were told that our daughter had this condition. That was the worst news any parent could receive. It took years for me to process our new way of life. From never been in hospital for any of my three children, we found ourselves in hospital almost every other week the first few months of her diagnosis.

It took 5 years for me to speak about her condition publicly. Another four years for me to start a not for profit organisation in Australia to support people impacted by SCD. Today together with my team at Australian Sickle Cell Advocacy Inc we are a national registrable body supporting families all over Australia.

This is a brief introduction about our family experience with SCD, one the most debilitating diseases that affects millions especially in Sub-Saharan Africa. This post though is about me reminiscing my daughter being discharged from hospital, 40 days after being in isolation after receiving a Bone Marrow Transplant, the only available cure for SCD. The full experience, the anxiety, the stress and all that came with this experience will be shared on another day. Never judge a person until you understand what they have gone through!

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