Lu's News

Hey guys, I didn’t think I’d have an update to share already but it seems things have moved pretty fast since my last blog. In fact, everything is moving much faster than anticipated. I saw my GI consultant last week, and in light of my new diagnosis of moderate dysphagia, combined with oesophageal and GI dysmotility, she now thinks it’s time to go ahead with a PEG tube assessment and hopefully get me on the waiting list for a gastrostomy. Before that though, I had to go for a video fluoroscopy organised by my speech & language therapist, in which I had to consume barium-coated foods. The results were rather interesting, revealing that the liquid I had ingested was regurgitating and gathering in my throat, leading to dysphagia. We already had an idea of what was happening based on my symptoms, but it was fascinating to see it. It was also good to have my suspicions confirmed. We’re going to try changing my reflux medication to see if that lessens the symptoms, but other than that, ...

Hello everyone, I know I've been very quiet lately but I'm still around. I've just been busy with appointments and general life. Trying to manage Marfan syndrome alongside my other health problems sometimes feels like a full-time job in itself. My joints have been rather painful lately but I've just started seeing a new physiotherapist who knows a lot about bones, joints and connective tissue issues. He's created an exercise plan for me and I'm doing my best to give them a go every day. My joints (and I) tire very easily, though. So I don't always achieve it to the best of my ability.  The physio examined me more thoroughly than previous ones, and he diagnosed me with  scissor walking . I'd never heard of this, but it now makes so much sense. In short, it just means that the knees, thighs, and legs cross over each other when walking. I've always walked this way, and I knew it was because of my hypermobility but I didn't know it had an actual name...