Lu's News

I have taken to Blogger tonight because it's the only place I can turn to when I want to completely express myself, and my annoyance. I'm sitting in my bedroom as I write this. I feel discouraged once again after todays appointment. It was physio this time, & just as useless as expected. The physician's manner was offhand & rude. I didn't want to go there but my Rheumatologist insisted on it, I think she just wanted to pass the book because I am a Marfan/Hypermobility patient, something that she knows little about, neither did the physio though. She asked me why I was there & offered me almost nothing, which I had already anticipated. What I didn't expect though was her rudeness & lack of understanding. She told me to "Park up my health problems, & leave them there"! Apparently that's called managing, wow, why didn't I think of that simple theory?! I felt upset at the time so I didn't respond to her small minded comment, but

I said last time that I wanted to discuss Marfan syndrome in my next blog so I should start by explaining what that actually is. Marfan syndrome is a rare connective tissue disease that only effects 1 in every 5,000 people. In most cases, it's passed on through inheritance, meaning it runs in the family, but a very small number of people have got it spontaneously, this is called a spontaneous mutation & means there's no family link, strangely, I happen to be in that category and I was diagnosed after suffering many health problems throughout my childhood. at the age of 13 I developed scoliosis (a curved spine) and needed major surgery to correct it, which then led to further investigations & that's how my Marfan diagnosis was discovered, although it wasn't quite as quick & easy as that, it took the doctors a few years to finally put a name to all my troubles. Marfan syndrome had a lot to answer for! Being told as a teenage that I had a rare & serious s