My Syndrome

[Tryp]

First off, keep your pity to yourself, don't want it nor need it. I just felt like sharing a little about me with you all. So feel special I was born with a syndrome called Marfan Syndrome.

What is Marfan you may ask? Well I'll tell you.

The Marfan syndrome is a medical condition and is classified as a heritable disorder of connective tissue. Connective tissue (including the extra-cellular matrix) is the glue and the scaffolding of the body, but is important in many more functions as well, such as development before birth, growth after birth, cushioning of joints, and enabling passage of light through the eye. All organs contain connective tissue, and the manifestations of the Marfan syndrome appear in many parts of the body, especially in the bones and ligaments (the skeletal system), the eyes (the ocular system), the heart and blood vessels (the cardiovascular system), the lungs (the pulmonary system), and the fibrous membrane covering the brain and spinal cord (the nervous system). The condition is named after a French pediatrician, Antoine Marfan, who in 1896 described a 5-year-old girl whose arms, legs, fingers and toes were disproportionately long and thin, whose muscle development was poor, and whose spine curved abnormally. Subsequent physicians described other patients with similar skeletal changes as well as eye problems. By the early part of the Twentieth Century, as a form of medical shorthand, Marfan's name became commonly used to refer to individuals who seemed to be affected by this condition. The term "syndrome" refers to the fact that a group of physical signs or changes occur together often enough for a pattern to be recognized. As will be discussed in this booklet, this pattern is essential in understanding the cause of this syndrome, in predicting the medical course of affected individuals and in devising forms of treatment.

There are over 200 different heritable disorders of connective tissue, including a few which closely resemble the Marfan syndrome. They are termed "heritable" because all have their basis in a change (mutation) in one gene or another and, because relatives have genes in common, these conditions may affect more than one person in a family. Not all are inherited in the same pattern as the Marfan syndrome.

- From National Mrfan Association

Now, you see how it says hertiable, there is one other way you can get the disorder. And that is by a mutation at birth of Chromosome 12. Which is the way I got the syndrome. Now say if I have kids and none of them have it, then the disorder it out of my family for good. Unless another gets the mutation. Marfan doesn't skip generations. Creepy huh?

Also see it says 1 and 5,000 people have the syndrome, those whom get it inheritated is about a 50/50 chance now with me it's a 1 and 10,000people chance. Thats how rare it is.

Yes I am in pain most of the time but hey it's the life i was given and I must deal with it. No time for feeling sorry for myself now is there?

But yeah I thought I'd share that tid-bit of information about me with you all.

If you want more information or wish to donate tot he fund please feel free to visit http://www.marfan.org