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Stepping Into the World of Marfan

An outsider’s perspective on the Marfan Syndrome. Information laced with an offering of humanity and a look at the real needs of these so called genetic “mutants”.

When you first step into the realm where those with the Marfan Syndrome live, it is easy to feel like a foreigner. It does not take long to realize that you cannot possibly know exactly what it is like to be one of these people. Dependant on the experiences and contacts the person has had, you may even find a bit of hostility towards you.

You have to be patient and distinguish yourself from the rest of the jerks that inhabit this planet. Because most of us know what the school playground was like. Now imagine being an obvious mutant there. Some people don’t even grow up. They bellow their tokens of wisdom from the safety of their cars as they pass by.

The rest of us? Well, we let them speak for us by not offering understanding and support. Do we have to experience something, to speak up for those who do?

The first time I met someone who told me they had Marfans, I did not know anything about it, so the first chance I had, I looked it up. I was surprised to find out how much information was not available. Best I could tell less that a quarter of a million people are diagnosed with it in North America. It was interesting that I could get more information on an ultra-rare bird than a semi-rare human.

I did finally find one website that seemed to answer most of my questions. It was a network designed to inform and support those affected. It is called the National Marfan Foundation.

Now, anything is going to scare you that includes terms such as incurable, disabling and sudden death. I mean seriously, we try to distance ourselves from the cold cruel world whenever possible. Preferably while sitting on this side of a TV or computer screen.

Stuff like this, we assume, are the plagues of third world countries with no proper health care. We are bombarded everyday by commercials for drugs to cure whatever ails us. We American’s do not run across too many things that cannot be cured or fixed.

However, here is the raw deal. Marfans, like Downs per se, is a genetic defect. A mutation. It cannot be reversed or “cured.” A child born to even one parent with the disorder has a 50% likelihood of inheriting it. Not only that, but it is also a spontaneous gene development in the first place. So it can happen to anyone, anywhere, at anytime during conception.

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  1. I want to thank Kristen for writing this article, I appreciate her telling the story of Marfan syndrome from someone’s view that doesn’t have it, but yet understands it. It is refreshing to see such an interest in this disorder as few people know about it or even want to know about it. Some people who have the disorder, either themselves or their families just bury their heads in the sand and pretend it doesn’t exist and never get the help they need dealing with it, it has a lot of emotional as well as physical affects.

    Because Marfan syndrome is a Connective Tissue disorder and because connective tissue is the glue and scaffolding of our bodies, it affects every area of the body on some us with the Marfan syndrome.

    Thank you Kristen for shedding some light on what needs to be done and giving us more awareness about Marfan syndrome.

    Hugs, Sherry

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