Thank you for visiting my fund raising page. I am rasing money for Genetic Disorders UK in aid of my little brother who suffers from Marfans Syndrome a genetic disorder of the connective tissue. Serious complications of this are defects of the heart valves and it affects the lungs, eyes and spinal cord. Here's a quick break down of the syndrome. 

Typical characteristics of Marfan syndrome include:

• being tall 
• abnormally long and slender limbs, fingers and toes (arachnodactyly)
• heart defects
• lens dislocation – where the lens of the eye falls into an abnormal position

A person with Marfan syndrome does not have enough of a protein called fibrillin in their connective tissue. This results in parts of their body being able to stretch abnormally when placed under any kind of stress.

There is no cure for Marfan syndrome, so treatment focuses on managing the symptoms and reducing the risk of complications.

The life expectancy of someone with Marfan syndrome may be reduced if the heart and aorta (the body's main artery) are significantly affected.

My brother may need life saving heart surgery in the future as Marfan syndrome can cause serious heart problems which can be fatal. 

 If you wish you find out more about the syndrome please visit www.marfan.org

Thank you very much xxx

 

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