My Birthday!

September 17, 2015 (My Birthday!!!)

I guess that I am not a great Blogger in that I do not post as often as I should…but I am REAL GOOD at responding to readers who read this blog and are interested in learning more about Marfan’s Syndrome!

Over the last year I have been in touch with Jeffery, Rose, Sharmaine, and John who have all been happy to find they were not alone in the world and were glad to compare notes with others with Marfan’s.  Rose, a college professor, even visited us here in CDO and each of you has an invitation, but maybe not all at the same time!  Here is a photo of Rose and myself:

The most common feature of Marfan’s that we seem to share is the problem of dislocated lenses.  The on-line research my Uncle Joe did when I was first diagnosed indicated that the best option was to get the lenses removed and wear tri-focal glasses.  Replacing the lens, which is common for “normal,” non-Marfan eyes, was NOT RECOMMENDED for me because the connective tissue which failed to hold the original lenses in place would almost certainly fail to hold the replacement artificial lenses in place.  Seems like a “no-brainer,” but we hear of very good eye docs who may not be quite as familiar with Marfan eyes as they are with regular eyes recommending replacement lenses.  Suggestion:  Do your homework.  This is the age of the internet, so use it!  Learn all you can about your body and how Marfan’s affects you, then filter what your docs say with what you have researched and discuss EVERYTHING!

For everyone, please remember that The Marfan Foundation (http://www.marfan.org/) is the very best source of information about Marfan’s.  Everything else, including what I post about my own experiences, is anecdotal and may not be universally true.

I am also occasionally approached by students who want to present Marfan’s as a case study for school, and this is really great!  It helps them with a first-person interview and it introduces Marfan’s to a lot of bright, young students who might otherwise only see a sentence or two about it in a textbook.  We must not hide our condition; we must not live in a box!  The more people who know about and understand Marfan’s, the better for all of us!  So students – keep contacting me!

Do you want to talk with others with Marfan’s? Check out the Marfan Foundation’s On-Line Community at http://www.marfan.org/get-involved/community/online-community.  You can chat, follow on Facebook, or follow the forums.  Remember, YOU ARE NOT ALONE! But you do need to reach out.  Very seldom will someone walk up to you and say, “Excuse me, but are you familiar with Marfan’s Syndrome?”

(Actually, I HAVE done that!  I saw Rose in a local mall, approached her with my little speech, and she turned around and her eyes got big and she said, “You’re the girl from the blog!” Serendipity!)

Well, I have to close now.  I have to go to Savemore, buy my present and cake, come home, wrap the present, make fruit salad, and get ready for the surprise party my family is going to have for me this afternoon! J

 “When you fall off a cliff, one of two things will happen.  Either God is going to catch you or He’s going to teach you to fly!”

Precy