BLOG

Meeting my extended KT family for the first time.

With a heart filled with all kinds of emotions, I was extremely excited to attend the KLIPPEL TENAUNAY SYNDROME conference in Minnesota. Growing up I felt alone. I was convinced that I was the only one with this syndrome for several reasons. One reason being that I never met or heard of anyone with it and doctors could not help at all. For years I visited many doctors and I seen several specialists and surgeons in the U.S. and Canada. Neither or was able to help with treatment, never mind a cure. All were clueless about my condition as much as I was. Helpless and voiceless I was, I suffered alone. I did not find out the name of this syndrome until I visited a doctor in Cuba, at the age of 22