Sofie (Denmark)

 In Personal stories

Sofie

A personal story

Hi!
My name is Sofie and I’m a 18 year old girl from Denmark.  I was covered with red blemishes when I was born.  My mother and father couldn’t see them and the doctors had no idea what they were.  That really scared my parents.  An old doctor told my parents that it was called CMTC when I was about 1 year old, and I am still diagnosed with that disorder.

My CMTC is quite remarkable because it a mix of four types of CMTC, which together form the fifth sort.  That means that I have blemishes, and one side of my body is a bit larger than the other side.  I have enlarged feet that the doctors tried to fix.  This meant that I needed lots of operations: eight to be exact.  I also had other operations.  My legs were different lengths so I needed an operation on my right thigh-bone to keep it from growing too much.  This made both my legs the same length, which is at least one operation that was successful.

I didn’t care if people stared at my feet and blemishes when I was a child.  I just wanted to have fun with other kids and my family. I’ve always enjoyed contacts with others: very sociable.  But as I got older I started to see that people stared at me, especially in the summer when I wore sandals or slippers. Good god, I HATED it.  That’s why I always wore socks and sometimes screamed at people.  Did this change when I grew up? Absolutely! I’ve learned that if you are honest with people about being different, they are much more sensitive and friendly than when you try and hide it.  That’s what I did when I was in high school and people thought it was great that I wasn’t afraid.  I’ve never been happier about going to school than now.  It makes it easier for everyone if you’re honest from the start.  You have to understand that people don’t mean to be rude.  It’s like when you see someone in a cast on his or her leg: people look, not to be rude, but because it looks different.  And that’s OK.

Support CMTC-OVM and young adults such as Sofie

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.

I promise all teenagers: you won’t miss anything because of your CMT. Take it from me.  I’m 18 now, have a great boyfriend and great friends, BUT the most import is that I’m a pain in the neck for my parents.  Just like any other teenager.

What did CMTC give me?

  • Sympathy for others.  It’s given me so much compassion for other people.  Having lots of doctor’s appointments and hospital visits is the result of my CMTC.  So I know what it’s like to be scared and angry, as well as mentally tired.  I can tell my friends:  I understand you.  You’re unsure of yourself.  And really understand where the fear of standing out comes from.
  • Getting people.  I’m often told that I really ‘get’ people for someone my age.  I can communicate with people of all ages.  I’m very open and hear that I make a very good first impression.  I think I learned that because I’d rather that people ask about my grades and not just stare at me.
  • Strong personality. CMTC can make you feel so negative.  I’ve been through a lot when I was a child, but it made me stronger.  My blemishes and strange feet won’t go away.  You have to learn to accept them.  That’s the tough reality.  I learned however scary it is, and how difficult is, I always come out on top.

Support CMTC-OVM and young adults such as Sofie

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.

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