Drawing life with Marfan Syndrome

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Drawing Life with Marfan Syndrome | Marfan Trust

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Written in 2020 but didn’t share on blogger

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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...
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Gastrostomy Surgery (PEG Tube Update)

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Hi, Everyone! I was in theatre recently, undergoing Gastrostomy surgery. For those who don't know, a Gastrostomy is a surgical procedure where a feeding tube is placed directly into the stomach. This would allow me to get the nutrition I need without having to rely on my oral intake alone, which is challenging for me due to my digestive disorders. I can still eat small amounts, but not enough to sustain myself. It's a common misconception that people with feeding tubes can't eat anything. But it all depends on each person’s individual situation. I can manage small portions of softer foods, but another person with a feeding tube might not be able to eat at all. For me, it helps me maintain my nutritional needs, since eating regular meals is difficult due to my GI & Oesophageal dysmotility. As I tried to prepare for the day ahead, I was consumed by a whirlwind of emotions- Including nervousness and relief. I knew this procedure was necessary and would make day-to-day life...
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Gastrostomy Surgery Is In Sight.. (August 2024)

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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, ...
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