The Critique of My Marfan Physique Part III. Whilst Lucy’s slender frame draws unwarranted comments from passers-by it has long remained ignored by the local doctors, until now. Finally, her weight loss is being taken seriously. Read on…


Hello everyone,  I'm so sorry it's taken so long for me to properly update you all. To be honest with you, I've just been busy trying to keep myself afloat. I've spoken to the dietician & he's put me on a range of daily supplements to try increasing my weight. However, this has had little effect so far. I'm still sitting at just about 6 stone & my BMI is worryingly low & I'm now classed as being malnourished. I've lost all muscle mass and my naked body isn't far off skin & bone. I mean, I have Marfan syndrome, I'm used to having a slim physique, but there's a difference between being slim, and being skeletal-looking. 

The dietician wants us to try avoiding further weight-loss, so he's put me on protein shots and high calorie milkshake drinks. I'm taking the shots 3x daily at the moment, as well as 1 milkshake drink, which I'm supposed to be consuming 2 of each day. However, I'm struggling to tolerate them along with food due to my GI problems. I can't keep the shots, shakes, and food down in the same way that others can, and I end up bringing everything back up if I consume more than my stomach can take. So I'm just having to do what I can until I see the GI consultant in a matter of weeks. It hasn't been easy to sort out an appointment with them. In fact, it's been awfully hard work! It's been postponed 3 times and trying to get my Dr to expedite it was like trying to get blood out of a stone. They didn't want to do it because it apparently wasn't serious enough. But eventually I got fed up of hearing that & I asked to speak to another Dr. I didn't expect it to get me anywhere but he asked me to go in & see him. He took one look at me when I got there and openly expressed his shock at how thin & unwell I looked. I cried because he said "Christ, you're too thin & look bloody ill", and although I was already aware of that, it was still a shock to hear a Doctor saying it. 

It was also a relief to have him taking it so seriously though, and he went on to say how disgusted he was with the lack of concern that the previous healthcare practitioners had shown even though I'd been telling them about my weight-loss and unpleasant GI tract issues all year. He was equally as furious with the hospital for cancelling on me time & time again, while leaving me to suffer. He got in touch with them straight away and played holy hell with them until they arranged an appointment for me. Which they did but they still couldn't fit me in for another few weeks. However, I accepted this as I was just glad that I was finally being listened to after more than six months of suffering. I've lost a lot of weight and I haven't been able to tolerate food like I used to. I still eat, because believe it or not, I do try to enjoy food. It just makes me feel so bloated & nausea's afterwards and if I'm not careful, I end up being sick. I'm used to living with health problems. I already have a lot going on, mainly due to Marfan syndrome, but it doesn't mean these new symptoms should just be overlooked. There is some suspicion that Marfan syndrome is the cause of it due to weak connective tissue internally, which I think I've previously spoken a bit about. But I'll have to wait & see what the specialist thinks.

I left the doctor’s surgery that day feeling more optimistic than I had done all year, purely because my concerns had been listened to instead of dismissed. Having said that though, I still felt quite upset as it was the first chance I'd had to properly talk to a professional about how much I'd been struggling lately. It was a huge relief to get it all off my chest, but it was also a stark reminder of how many health problems I have. I mean, I know in comparison to some people, I'm pretty fortunate in terms of my health and I'm so grateful for that. But I still have a magnitude of long term medical conditions which are taking their toll on my body, emotions, and mentality. The Doctor could see how distressed I was, and he spent 35 minutes talking to me about a range of different things. I told him how disheartened I was that no one had wanted to listen, help, or even understand at all this year & it had made me feel like I didn't have a right to be concerned about my problems. However, he did help to ease my worries a little by saying that he'd be happy to oversea my care from now on. So any appointments or problems I have in the future will hopefully be with him. 

Life Of Lu.. By Lucy Alexandra Atkinson.. X 


The Marfan Trust is registered in England and Wales under charity number 328070 at Guy Scadding Building, Dovehouse Street, London SW3 6LY. Contact us at [email protected] or by phone on + 44 (0)20 7594 1605
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