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My Marfan Experience – Hypermobility #MarfanMonday

Posted By HMSA Social Media Coordinator, November 21, 2016

My Marfan Experience – Hypermobility #MarfanMonday

It’s Monday so that means it’s time for another Marfan Monday post where I talk about my personal experience with the condition. For this week’s post I talked to some of my friends who have Marfan as well and asked them about what they wanted people to talk about more when it comes to the characteristics and symptoms of the condition. Something that came up a lot is that people think that because of the big focus on the cardiology side of Marfan it means that the hypermobility element is hardly being talked about and recognised. So, today I thought I’d share my personal experience with having hypermobile joints, I think this is something that a lot of people (not just Marfan sufferers) will be able to relate to.

When I was younger, about primary school age, the first Marfan related problem I had was bendy knees. I was always sitting awkwardly and in weird positions which of course then led to being in more pain and that was my first memory of my condition causing me pain. Over the years it only continued as I grew up and I went in and out of physio, unfortunately we just never found the right person to help me though. Then I remember showing everyone the cool tricks I could do with my fingers and thumbs, bending them back and moving them around. I realise now that doing those things hasn’t done me any favours but as a child it was a fun thing to do.

As I grew older I found that more and more of my joints were hypermobile and problematic. I struggled to write at school as my wrists played up and would hurt because of the stress I was putting on my bendy joints. It wasn’t until I got into my late teens that I actually started suffering with subluxations and dislocations though. My toes dislocate the most often and my knees are always slipping around but it’s become part of daily life for me. Usually I can just pop my joints back in, keep them in place with a support and go about my day. I’m hoping physio will be able to help strengthen my muscles in the future though so I can avoid dislocations.



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