Marfact #16, quality of life, and thanks!

In honor of Marfan Syndrome awareness month, here’s today’s Marfact (provided by the wonderful Marfan Foundation).

Marfact #16: There is no cure for Marfan syndrome. However, a range of treatment options can reduce and sometimes prevent complications.

When the words Marfan Syndrome were first mentioned to my parents as something that I could potentially have they carried with them a very bleak and devastating outcome. It was thought that should I have the syndrome I would likely only live long enough to become a young adult at best. Today however, because of the treatment options offered – mainly where our cardiovascular systems are concerned – and the ever-expanding knowledge of connective tissue disorders, our lifespans are now on average the same as those in the general population.

It’s truly amazing how much things can change in the span of 20 years. Length of life isn’t so much of a worry anymore, but with that instead comes the increasing fear of quality of life. Our faulty connective tissue now has far longer to carry us than it ever has before. It’s scary to think about what kind of shape I’ll be in physically or how much more the chronic pain will have increased a year from now, never mind 40 years from now.

But, fears for the future aside, I’m extremely thankful that I live in a time where so much is available to us medically. And, if that much can change in 20 or 30 years who knows what treatment options we’ll have in another decade or two.

Visit www.marfan.org for more information.

I want to thank the Marfan Foundation for supporting Tissue Tales and sharing it on their Facebook page. I have so much love and appreciation for all that they have done and continue to do for those of us who live with connective tissue disorders and to have their support where this blog is concerned is an enormous honor.

And a ton of thanks to the wonderful Ben for his reblogs of the Marfacts! Please do stop by Ben’s awesome blog and have a read – and a look at his art. You’ll be glad that you did!

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