The critique of my Marfan physique

I'd like to start this post by saying a sarcastic thank-you to the old guy who I had the displeasure of meeting in a shopping store on Friday, without our encounter I wouldn't have thought of blogging about this particular subject.Your rather rude manner has given me an opportunity to discuss a topic that can be quite an issue for many others in my position. So thanks again Mr Judgmental, I guess I owe you a high 5! Also, before I carry on I want to state that I'm not tarring all older people with the same brush, or meaning to cause offence to them or anyone else. I just wanted to do a post that shows how younger people with disabilities (especially hidden ones) get treated by certain members of the elderly. This particular situation happened while I was in the supermarket with my mother & as I always do when out shopping, I'd taken myself off for a sit down due to pain & tiredness caused by my health problems. Normally I'd stay there around 10 or 15 minut

Awareness amongst healthcare professionals (Feb 22)

- March 03, 2022

Last month it was Marfan syndrome Awareness Month & I was asked by Marfan Trust to write a short blog about why I think more awareness needs to be raised amongst medical professionals. I've written a little bit about myself & my own experiences. I could've gone on forever about why I think awareness is so vitally important, but I tried to keep it quite brief, as I'm sure you'll all have your own reasons for why you think more awareness needs to be raised. If you'd like to share them with me, don't be afraid to get in touch. Thanks everyone, you'll find a link to my article right here. 💓 https://www.marfantrust.org/articles/lucy-and-doctors?fbclid=IwAR0mI483m5jH-OQ0Y1feqEnRRIlhJgTLtFZ-6ekl7WRHVtWQL-a6QrGHXuY

Digestive disarray part 2

- March 01, 2022

Hi guys, I’m back with digestive disarray part 2 🙈 I don’t really know what the point of this blog is to be honest, but I find it therapeutic to blog my way through testing times. I find it easier than turning to those around me, as I feel like they’d never understand my situation. My symptoms of Marfan syndrome & the associated conditions are so unpredictable that I barely understand them myself, so how can I explain them to others? How can I explain that some days are better than others when I don’t even understand that myself? I don’t know why I suffer more some days than others. I don’t know why my symptoms are severe one day, but okay the next. Yesterday’s digestive disarray wasn’t quite as bad as the day before, but it was still hard to deal with. My lunch & breakfast went down without too much drama. I felt a little bloated & sick but nothing too dramatic. I was hungry yesterday because my stomach was pretty empty after vomiting so much on Sunday. So I was ready fo

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