Eden (United Kingdom)
Eden
A personal story
My name is Eden, I am 16 years old (2020) and based in the United Kingdom and am a patient of CMTC.
My form of CMTC consists of patterns all the way along my arms and hands, the back of my legs, and other areas all over my body. The patterns will change colour depending on the weather and temperature also!
CMTC has no physical effect on me, I never feel any sort of discomfort, it is purely just visual markings. Except when I get cold, my hands become quite sore swollen easily because of my blood vessels being closer to the surface of my skin, but that is something I have learnt to deal with through maturing and looking after myself properly.
Growing up, I never looked at myself different from any other child. Why should I? Markings and skin don’t define what you are capable of doing, or who you are. Yes, they should be cherished as CMTC is a unique blessing, but nevertheless, I have always been equal to any other child in my class.
Support CMTC-OVM and patients like Eden
With our community we want to improve the quality of life of people who have vascular malformations. CMTC is a rare condition and therefore we think it is important that everyone who has CMTC, or other blood vessel abnormalities, can come into contact with each other. We cannot do this without the support of our donors.
Of course, when I was younger I received some comments from other children that I took offensively. I remember one little girl not wanting to hold my hand in a circle because my skin looked ‘weird’, I’ve also had several peers asking me if I had ‘burnt’ myself, or asking me whether it ‘hurts.’ I never got upset about the comments, just annoyed when they would be asked over and over again. However, over time I learned to understand that children are just interested, inquisitive, and that’s okay!
I have never been singled out, picked on or teased. I have been lucky enough to grow up around amazing people and friends who cherish and accept not only my differences.
Now that I am older, and surrounded by my peers who are also more socially experienced, my skin honestly never comes up in a topic of conversation; unless perhaps I am meeting someone new, and once again, they are only inquisitive. As a matter of fact, I have grown to like it when people ask about my skin! I now understand that people are just interested and fascinated and I love being able to talk about something so special to me.
CMTC is a huge part of who I am, and I am more than proud of it. I have never looked upon myself negatively, I have never doubted myself because of the markings. It is such a positive thing because so many people wish they could have something a little bit unique, and I suppose we were blessed to be able to have that!
Support CMTC-OVM and patients like Eden
With our community we want to improve the quality of life of people who have vascular malformations. CMTC is a rare condition and therefore we think it is important that everyone who has CMTC, or other blood vessel abnormalities, can come into contact with each other. We cannot do this without the support of our donors.