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MARFAN SYNDROME AWARENESS MONTH

I'm finally getting around to writing this blog. I've been trying to plan it for a few weeks now but because I already wrote a blog based on my Marfan experience back in November, I didn't really know what to say. I don't want to bore you all by repeating everything lol. But now that Marfan Syndrome Awareness Month is here, I wanted to take the chance to bring up the subject again even if I don't have much to say, as anything is worth posting if it mentions Marfan Syndrome. 

Up until last year, I've always kept quiet about my Marfan Syndrome diagnosis because I was too embarrassed to admit that my chronic health problems were the result of a rare and serious disorder, I felt different enough as it was, and the thought of people knowing I had Marfan Syndrome made me feel ever more outcasted, so, apart from family, I never told anyone, which is why it was such a big deal to me when I finally started opening up. 

My determination to speak out came from my annoyance at how under recognised Marfan Syndrome actually is. In my own small way I'm trying to change that by spreading the word across the internet. I don't do it for attention or sympathy reasons, I do it because I am living with a very rare & serious health condition that needs to be brought into the limelight & given the acknowledgement that it deserves. 


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