CMTC is a very rare blood vessel disease with complications ranging from cosmetic (bruising) to fatal. I cannot walk or cycle far. I regularly have pain and CMTC limits my life. My self-image and self-confidence are not really positive. At school I was bullied because, for example, I could not keep up with gymnastics. I could not participate in the 'Avondvierdaagse' walk with my class.

Why is treatment necessary?

One of the problems is that very often action can only be taken if complications arise. Complications can occur in many areas such as asymmetrical legs and brain abnormalities where real treatment is sometimes not possible. Treatment of the condition in advance is not possible because it is particularly difficult to predict which complications will occur over time. We are engaged in, among other things, international genetic research in which one of the goals is to anticipate potential complications in time and to take preventive action.

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