My name is Annekee and I am 18 years old (2025). I have Klippel Trenaunay syndrome on my left leg. This leads to pain in my legs when I have to stand long or do intensive training and sometimes slow training when it is a bad period. On school it can be very difficult to have such a rare disease. People don’t recognize it and, in my case, cannot see it on the outside. I always wear long pants and cover up so you cannot see the difference in thickness. My left leg is smaller and contains red birthmarks. I am insecure about this and therefore cover up when I am at school.
Covering up leads to a little more confidence because I feel more “normal” but also makes things more difficult. People do not see anything and therefore get to the conclusion there is nothing wrong. When I tell people I have pain in my leg, I unfortunately do not always get taken seriously. People think I am lazy or just want to get out of gym class. With people I mean classmates but also teachers. They often sigh when I tell them my leg hurts and push me to try harder as if I am lazy. This gives an awful feeling because in reality, I always try my very best and I am actually quite competitive. Even when my signed note by the doctor was shown to one of my teachers, they had doubts if it was a real disease.
Also changing in the changing room is something difficult because my leg shows, I fortunately never got any bad comments about my leg, only questions. This is very positive, and I rather explain it to someone than hear some comments behind my back. On the first day of secondary school, I was very nervous about being different and I wanted to do something about it that made me more secure. I told my class on the first day I had a disease on my leg and therefore have pain sometimes and cannot participate on every gym class. This was very frightening but afterwards I am so grateful I did it because I did not have to explain myself every time and I could tell them first before there were comments behind my back.
I only did this in my first year and the years after it became more difficult because then people did not know and had a prejudice about me. I will always recommend telling people in the first place because then you have your own way of saying it and it will feel empowering. The thing about covering my leg up is something I believe to not always be the solution. I really like dresses, but I never wear them in summer because I want to feel “normal” and thereby not show my leg. The thing is that this disease is part of me, my body, and my life. It might not always feel this way, but it is. It is not “normal” in a way because it is a physical defect, but it is normal in my body and it will always stay there. Embracing this disease is a difficult process but really important.
This process will look different for everyone of course, but for me starting to wear dresses because they make me happy is a really good beginning. Will people be staring? Maybe. Will they ask questions? Maybe. But is that something that should stop a person by wearing something that they like? Absolutely not.
