Wow! I also have Klippel Trenaunay. My case is very minor but noticeable. My left side is smaller than my right all the way to my neck. I have the trademark birth spots all over my legs, side and arms.
When I was born the doctors tried to make my mother amputate my leg which was more or less a purple stub at the time. My mother refused and I have since grown into a perfectly normal looking adult.
When I was 3 years younger than you they (shriners hospital) offered me a free surgery on any body part of my choosing to even me out. I refused and told them to operate on someone that needed more help than me.
Hopefully, you turn the corner. Its very rare I get the chance to talk to someone with the same physical issues I have. The only thing I can recommend is stay in shape and keep your calcium up. This should help with bone issues later on. Also, donate blood every 2 months. It will help thin you out from the over production of blood that is actually causing your condition.
mggooman51 karma
Wow! I also have Klippel Trenaunay. My case is very minor but noticeable. My left side is smaller than my right all the way to my neck. I have the trademark birth spots all over my legs, side and arms.
When I was born the doctors tried to make my mother amputate my leg which was more or less a purple stub at the time. My mother refused and I have since grown into a perfectly normal looking adult.
When I was 3 years younger than you they (shriners hospital) offered me a free surgery on any body part of my choosing to even me out. I refused and told them to operate on someone that needed more help than me.
Hopefully, you turn the corner. Its very rare I get the chance to talk to someone with the same physical issues I have. The only thing I can recommend is stay in shape and keep your calcium up. This should help with bone issues later on. Also, donate blood every 2 months. It will help thin you out from the over production of blood that is actually causing your condition.
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