Being born with Marfan Syndrome has not been easy. Infact, it has been a rather difficult challenge. For those that do not know, Marfan Syndrome is a genetic disorder that effects the connective tissue of the body and it is a condition that I have lived with my entire life. The physical characteristics of people with Marfan's tend to be tall with long hands and arms and tend to have long thin fingers. Furthermore, I ended up having a slightly more severe condition of the disorder because my heart valves, eyes, and spinal cord have suffered defects throughout the course of my life. Some people whom have the condition go through most of their lives not not knowing of it's existence and it goes undiagnosed until their late 20's or 30's (which is why it's important for me to educate people about this disorder.)
For me, it was especially challenging to grow up with the condition because of these things. As a child when I was going to both elementary and middle school I always felt different from the rest of my classmates. Because of the physical characteristics, I was picked on and bullied because of my appearance and I was not allowed to play many of the sports during P.E. while I was in middle school. Then, later in high school I had an operation that would leave me using the assistance of crutches, which too did not make things easier. In spite of this, I am grateful that I had amazing parents whom looked for the best doctors on the genetic disorder.
I feel it is very important more people know about Marfan's, because of the fact that many go undiagnosed. Lastly, even though life I have always found it hard to put down my experiences into words, I draw and paint them onto paper and canvas. I use my art as an outlet to express my ideas and the things that I have been through. Yet in spite of everything that I have experienced, this disorder isn't what dictates me. Though I take medications and I try to keep myself healthy, I feel that this is something that I live with, yet it isn't what I live by.
For more information on Marfan Syndrome please visit:
The National Marfan Foundation
**Originally published in Spanish in the April 14th, 2012 issue of Antesala