kaatie85

· 09 Oct 2020

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Life with Crest Syndrome 1.

#crestsyndrome #sclerodermie #chronischziek #autoimmuunziekte

In 1989, when I was 3 years old, my parents were told that I had an autoimmune disease. #scelodermie #crestsyndrome
Now that I'm a mother myself, I want nothing to touch my child, so now I understand even more how worried you can be as a parent when your child is diagnosed with such a diagnosis. My son is now 3 years old and was tested at birth for autoimmune abnormalities, but fortunately he is completely healthy.

I didn't want to hear that I was sick most of my elementary school period, because kids don't want to be different from their boyfriends. (I only had two in elementary school). I've been in the hospital a couple of times, and then other kids are going to ask questions. Nevertheless, I have also kept some nice memories of it.

I have been used as a guinea pig for years, because this disease seemingly does not occur in children. (Now I know better, because it does occur in children, only not so often). In 1998, on doctor's advice, we emigrated as a family. At first I felt pretty bad, because my brothers had to leave their boyfriends behind. They, like my parents, actually gave up everything for my health then, and I will always be grateful to them for that.

Fortunately, I have a great family (my parents, brothers, husband and son), without them I would not be who I am now.

Until next time...