Wednesday, April 22, 2015

Why am I so Tall? What is Marfan Syndrome?

There are days when I can go out into the world and I can get things done without notice. Most days, however, are not that way. As a 6 ft tall woman with long arms, fingers, and legs I tend to stick out. Strangers approach and can not help but ask the same questions time and again. "How tall are you?", "Do you play basketball?", and my favorite isn't even a question but a statement, "You are really tall!" Yes, I know. I can't get too annoyed by this because most of these people do not realize how often I hear these things. They are singular in their minds, they are the only ones asking no matter how often I have heard it. Now lets move past the annoying social interaction part of my physicality and get to the bones of it. The reason for the way I look.



Marfan Syndrome is a connective tissue disorder.Connective tissue is one of the things inside of us that holds us together. It is what supports, connects, or separates tissues and organs in our bodies. It also plays a part in the growth and development of our bodies as we age. So...obviously really important stuff. Marfan Syndrome causes these connective tissues to weaken. It also causes excessive growth during adolescence and puberty.You gain a very large arm span, leg length, finger length, and toe and foot length. Get used to stretch marks because your skin can not keep up with these excessive growth spurts and lacks the flexibility to adapt. The most worrisome factor for a person with Marfans is their heart, specifically the aorta. Marfans can cause an enlargement of the aorta and that can lead to aneurysms, which at times, results in death. Taking a medication that controls heart rate and pressure is used to prevent growth of the aorta, but eventually some must have surgery to replace the enlarged portion.There are also a lot of secondary issues that can come along for the ride as well. To name a few there is possibilities of having: dislocated lenses, skeletal problems, Dural ectasia, scoliosis, flat feet, and jaw issues. I saved the best information for last. The worst thing about this disorder is that it is genetic. The chance to pass it along to your offspring is 50/50. I am still awaiting information about whether my beautiful daughter will have it or not. Which is gut-wrenchingly painful to think about. Its impossible to not have guilt eat away at you when you know you can pass on a medical issue to your babies.

In the early days of being diagnosed Marfans was not well known at all. I would go to the doctor and they would hear about my condition and suddenly shepherd in a group of med students to ogle me. "Do this, now do that", "Wow see how she can do that." It was uncomfortable and weird. I knew it was necessary though because now the information about our condition will be more known. The more doctors that know about it the better off our community will be. More people can be diagnosed properly and more advances can be made. So I can only harden myself to the uncomfortable situation and make the best of it.

I could sit back and play the pity game all day over my condition but what's the point? I am alive, I have a wonderful husband and amazing daughter. I have a home and a wonderful supportive group of friends. I have food to eat and clothes to wear. When ever I get depressed or start to blame and get angry I try to think about those things. The things I am lucky to have and not the things that are wrong. I can not change anything physically inside of me but I can change my point of view. This is my advice to all those out there suffering from medical issues or psychological troubles. Accept that there are some things that will not change and change the things you can.




In the end after all is said and done what is important about living? What matters isn't whether anyone else accepts you. What matters is if you accept yourself because this will drive you. If I love myself, every quirk and oddity, then I am capable of being happy. If you understand the frailties and insecurities in yourself you then can understand so much more about this world. The first step to understanding others is understanding yourself. You can not expect others to give you self respect, you create that. I used to live a life driven by other's opinions and judgments and that was a useless experience. I refuse to live that way anymore. So no matter the looks and side eyes given to me in this world I will stand TALL and make my way in this life proud of who I am. Shouldn't everyone?


For more information about Marfans you can go to these links The Marfan Foundation or Marfan Trust. Thank you for taking the time to read this blog and I hope you continue to do so.



2 comments:

  1. I am tall too at 5'10' and hate when people point it out. Plus my big boobs don't help any either. Can't miss me coming. Thanks again for sharing on #momsterslink and I have followed you through BlogLovin :)

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    1. I will deff return the favor! I swear some people act like seeing a tall woman is the freakiest thing they have ever seen...makes me giggle.

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