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Showing posts from February, 2017

Living With An Untold Diagnosis

Up until last year I had kept very quiet about my Marfan syndrome diagnosis since I was 16 years old, it remained unrevealed to almost everyone (including some family members) I kept it to myself because I didn't want to be seen as different, which was already something I felt & I didn't want to be known as the girl with a rare disease as well. My Mum knew I had the condition as she was always with me at my hospital appointments but I very rarely engaged in conversation with her about it as I didn't want to acknowledge the matter. As the years passed, my rare health condition remained a secret & I'd be lying if I said the burden wasn't heavy at times. Carrying it around with me weighed me down & sometimes I wanted to share my worries, I wanted to tell someone that I was struggling to accept the diagnosis I'd been given, but I'd hidden it for so long that I didn't know how to open up about it. That doesn't mean Marfan syndrome wasn't a

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 beca use 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 re peating 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 Syndro me 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 enou gh 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 fr