Sickle cell disease is a…
“Hereditary disease in which the red blood cells deform into a kind of sickle after delivering oxygen. Because of that crazy shape, they get caught in the blood vessel and in each other, which can cause a blockage (a crisis), which causes severe pain. It was like being stabbed in me with a knife from the inside. The first time that happened, I was 11 months old. Although I wasn’t a difficult baby at all, my mother couldn’t stop me and saw that I was in pain. After a series of tests, the doctors diagnosed sickle cell disease. Neither of my parents knew they were carriers.”
What triggers it…
“It’s different for everyone. Stress and cold are the biggest trigger factors for me. I therefore try to live as consciously as possible and to ensure that I am always warm. In the winter I wear thermal clothing under everything, I sleep with a hot water bottle and the heating is always on in the house – not nice with the current prices. But it does work, because I used to have pain much more often. I have small crises, which last about four days, every three to four months. Major crises, where I have to be hospitalized once or twice a year.”
I usually feel the pain…
“Throughout my whole body, but the crisis is happening in the same place. This can also shift over the years. If the congestion happens to happen in my brain, heart or lungs, it could be fatal. I talk about it with my boyfriend every now and then. Suppose we have children, am I there to watch them grow old? Will I see any grandchildren? And the pregnancy, how will it go? Then I would have to stop taking my medication and be closely monitored. I try not to think about it too often because it makes me angry and scared, but it is the reality.”
I’ve always said…
“That if I had a partner who is a carrier or has sickle cell disease, I wouldn’t want children. I wouldn’t want to do that to my son or daughter. I used to have a really hard time accepting my illness. I wanted to be like all the other children, but I was unable to participate in many activities and was frequently hospitalized. Besides, I don’t wish this pain on anyone. But luckily my friend is healthy. Unfortunately, much is still unclear about sickle cell disease. Hopefully my story will help give it some exposure.”
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This article appears in the new VROUW Magazine (every Saturday at De Telegraaf). As a premium member you can also read it online (sometimes earlier).