Lu's News

Please follow the links to keep up to date with my blogs for Marfan Trust    https://www.marfantrust.org/articles/201-the-critique-of-my-marfan-physique https://www.marfantrust.org/articles/212-the-critique-of-my-marfan-physique-part-ii   https://www.marfantrust.org/articles/the-critique-of-my-marfan-physique-part-iii https://www.marfantrust.org/articles/the-critique-of-my-marfan-physique-part-iv https://www.marfantrust.org/articles/the-critique-of-my-marfan-physique-conclusion   https://www.marfantrust.org/articles/lucy-s-blog-the-critique-of-my-marfan-physique-part-vi https://www.marfantrust.org/articles/lucy-s-blog-the-critique-of-my-marfan-physique-part-vii   https://www.marfantrust.org/articles/lucy-s-blog-part-8 https://www.marfantrust.org/articles/lucy-s-blog-part-9  

Part one:  https://www.marfantrust.org/articles/201-the-critique-of-my-marfan-physique Part 2:  https://www.marfantrust.org/articles/212-the-critique-of-my-marfan-physique-part-ii Part 3:  https://www.marfantrust.org/articles/the-critique-of-my-marfan-physique-part-iii Part 4:  https://www.marfantrust.org/articles/the-critique-of-my-marfan-physique-part-iv Part 5:  https://www.marfantrust.org/articles/the-critique-of-my-marfan-physique-conclusion Part 6:  https://www.marfantrust.org/articles/lucy-s-blog-the-critique-of-my-marfan-physique-part-vi Part 7:  https://www.marfantrust.org/articles/lucy-s-blog-the-critique-of-my-marfan-physique-part-vii  

It's almost a decade now since my disastrous dental problems began. I was still a teenager & suffering relentlessly with toothache and painfully sore gums. I consulted my Dentist numerous times regarding this miserable matter but he couldn't pinpoint an actual cause. He said my gums were severely inflamed and my teeth were very sensitive. That was the best answer he could provide me with. The annoying thing was that it couldn't be treated as there was little that could be done for sensitivity & inflammation. so I was just advised to keep my oral hygiene as healthy as possible, and avoid eating anything that triggered it off. I didn't understand why this was happening though as I wasn't someone who lived off sugary snacks, so as a rule, my teeth & gums should not have been so inflamed and sore. I mean, I liked a chocolate bar and a cake as much as anybody else, but I wasn't consuming enough to cause so much dental distress. It became an on-going issue

Over the last few years, I've been very open on Blogger about my life with Marfan syndrome and numerous health conditions, but I haven't been quite as forthcoming with those around me because if I'm to be honest, I struggle to fully express the significant impact that chronic illness/health conditions have on my day to day life. I don't look like someone with chronic illnesses. I don't use a wheelchair, a stick or any disability aids, so I'm afraid of telling some people in case they think I'm over dramatising it. But that is far from the truth. I've lived with chronic pain for a long time now, gradually building up and becoming more widespread over the years. I've learnt to become good at pushing my unpleasant physical sensations aside to get on with my every day life though, so no one would ever guess it. No one would know (unless you are my Mother) that on a typical day I experience several different types of pain and discomfort throughout my body

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