Our new series Anecdotes and Antidotes, Supporters’ Corner (appearing on the last Thursday of every month) continues apace with a candid and impassioned submission from guest blogger Lucy. Written in response to the unwelcome yet frequently made remarks on her strikingly slender physique, Lucy’s piece will resonate with many Marfan folk whose slim stature is also the recipient of such unwarranted attention.

If you're already familiar with Marfan syndrome, then you might know that most people with the condition are typically very slim, with disproportionately long, slender arms and legs. As a young lady with Marfan syndrome myself, I feel I fit that description perfectly, what with my strikingly thin physique and bony features. Admittedly, I'm a stereotypical looking Marfan syndrome patient. I'm often asked by family, friends, and even strangers why I'm so strikingly skinny. 

I don't mind all that much anymore because I'm used to being judged based on my abnormally slim body-type. However, it still grates on me a little when people ask intrusive questions about my diet and my exercise regime. I've had people directly insinuating that they think I have an eating disorder because I'm so slim. It's infuriating, as I then feel like I have to explain my medical condition to them when I know for a fact that they won't understand it. Some people probably could understand it if they tried, but I know they don't want to as they find it easier to be judgemental and assume that I'm underweight because I don't eat. I guess it's easier than them having to research a health condition that they've never heard of. 

I get told all the time that I need to eat more, bulk up, have bigger portions, drink protein shakes and so on. It never stops. It's becoming a bit tedious if I'm honest. I thank them for their concern, but I wish they'd understand that they aren't doing me any favours by trying to encourage me to consume more calories or pig out on junk good. For the love of god, I'm sick of hearing it! Encouraging someone with Marfan syndrome to pile on the pounds could have an adverse effect on their health conditions. It could put too much pressure on my unstable joints, as well as increase the high blood pressure and cholesterol that I also have as a result of Marfan syndrome. 

Medical experts claim that most people with Marfan syndrome have difficulty gaining weight no matter how hard they try. They say there is also no evidence to suggest that food supplementation provides any benefit to us, either. So again, I thank you for your well intended advice, but I can assure you, consuming copious amounts of god damn food it's unlikely to help. I don't want to sound awfully blunt here, but I'm just trying to be honest. According to medical professionals, the reason why so many people with Marfan syndrome simply cannot gain weight isn't fully understood, but they believe it may have something to do with the underdeveloped muscles that are associated with Marfan syndrome. 

We also have very little fat under the skin, which, in my case, contributes to my slender-looking appearance. I have absolutely no muscle tone in my arms or legs, which is giving me a very skeletal-like frame at the moment, but trying to convince people that it's caused by Marfan syndrome rather than poor eating habits, has always proved to be the biggest challenge. Despite my inability to gain weight, I do try my best to eat a well-balanced diet everyday, and you might not believe it, but I very rarely miss one of my Mothers home-cooked evening meals that she makes especially for me to 'feed me up' every day. 

So please forgive me for not always taking your assumptions kindly. I'm sorry to sound so harsh, but I don't want my Marfan physique to be criticised by people who don't understand it. I've written this blog not only for myself, but for the countless of other individuals living with Marfan syndrome who are being judged every day because of their slender build. I hope they feel able to share this with friends and family who may not understand their condition. 

With much love, from Life Of Lu (Lucy-Alexandra Atkinson).. X

Marfan Trust, a CIO registered as a charity in England in Wales with charity number 1198847 at: c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
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