Lu's News

Hi everyone, I hope you’re all okay. I’m doing as well as I possibly can under the circumstances. I know I haven’t been a consistent blogger this year but it just seems like all my time is taken up by appointments & looking after myself. I’m trying to get back into the swing of blogging again though. Thank you for sticking around. I really do appreciate it. I found out recently that my osteoporosis diagnosis is much more severe than I first thought, and it needs prompt treatment. However, my consultant has told me to avoid the prescribed medication at all costs because it could potentially worsen my GI conditions. He’s advised my GPs to look into alternative treatments but they don’t seem to know what route to go down because of my complex health history, so my case has now been referred to the medical advisory board for them to hopefully make a decision after taking all my health problems into account. The treatment isn’t likely to reverse my osteoporosis, but it could prevent fur...

Over the last few years, I've been very open 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 everyday 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, ranging fr...

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