Sickle Cell Warrier

Sophia Anna

My name is Sophia Anna, I’m a health student/worker, invisible illness advocate and a Sickle Cell Warrior.  I had my first crisis at 6 months old, and spent the majority of my childhood, in hospital, on morphine and hydration therapy, unable to play, swim or run around with other kids.  My schooling was predominantly at home and as I grew older, I started having blood transfusions to control the crises and prevent further damage to my organs.  At 12, after a period of sickling crises, I woke up one night and realized I couldn’t extend my left leg out.  Soon after, I was diagnosed with Avascular necrosis of my femoral hip bone – this occurs where blood and oxygen is starved and leads to eventual bone death.

My first week of high school, I had to learn to use a pair of crutches and a wheelchair.  The doctor told me I wouldn’t walk again.

Today, at 26, I walk without aid and I am a huge advocate for sharing your truth through disability and invisible illness.   I try to keep as fit and healthy as possible, keeping my broken joint as flexible as possible and I undergo monthly blood exchanges to keep my sickle cell count low.   Outside of my condition, I enjoy modeling, writing, studying hard, and breaking down stigma online about invisible illness.

A diagnosis is not the end of your story.  It’s the beginning.