"It’s complicated..." is usually a common response to someone asking about a relationship status. For me, it’s how I would describe my life with sickle cell, complicated and full of complications.
Growing up with sickle cell
When I was growing up with sickle cell I only understood a few things:
- My red blood cells were abnormally shaped like a letter c.
- If I didn’t keep warm, drink plenty and get enough rest, I could end up in severe pain known as a sickle crisis.
- If I ended up in a sickle crisis, I would have to go to the hospital to feel better.
That was literally what I thought sickle cell was and as a child, that was hard enough to deal with. Fast forward 31 years and I wish I could have prepared my younger self for the list of complications sickle cell had in store for me.
My first crises
According to my parents, I had my first sickle cell crisis at 6 months old. I had a very bad case of pneumonia which, was more than likely brought on by the cold of winter. This continued to be a regular complication throughout most of my childhood. When other children caught a cold they would at worst have a day or two off school. I on the other hand would end up with a severe chest infection and at least 5 days in hospital on IV antibiotics.
The turning point
Thinking that this was the worst it could get, my family and I would enjoy summers and prepare for whatever the cold of winter would bring. That was until one summer when I was 13 and became really unwell.
The speed at which I deteriorated was different to a normal sickle crisis. I later found out that I had a stroke. This is a common complication for children with sickle cell.
One of many complications
The stroke was just another one of many sickle cell complications that I experienced over the coming years. At 15 I was diagnosed with having gallstones. Then at 16 I was rushed to critical care with acute chest syndrome and given a 50% chance of surviving. At 18 I was diagnosed with avascular necrosis in both hips.
I eventually asked my doctor for a list of all the complications that were often seen in people that live with sickle cell. I felt like these were things I wish I was aware of as I had no idea sickle cell could be so severe and life-threatening.
Up to this day, there are only a few complications on that list that I haven’t experienced, and I believe they should be highlighted more to patients.
Talking about sickle cell
When people ask about sickle cell, there is typically a textbook response about the shape of the blood cells, the lack of oxygen, and the painful sickle crisis that can occur as a result. However, the severity of sickle cell and the complications that it can cause should also be addressed more publicly.
I honestly wish a painful sickle crisis was all I had to deal with; I would happily take that any day over the complications that I have experienced.
Do you consider yourself an advocate for sickle cell?