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Growing up a Bendy #MarfanMonday

Posted By HMSA Social Media Coordinator, May 8, 2017

Growing Up Bendy – Marfan Monday

Growing up with a HDCT can often be quite tricky and Marfan certainly threw a few obstacles into my life as I grew up. I suffered with aching joints, often referred to as growing pains by my doctors, that I’m sure many of you can relate to regardless of which condition you have, but I was a pretty determined kid and if I wanted to climb that tree then I was definitely going to climb that tree. I think my Mum struck the perfect balance of letting me do what everyone else was doing but also protecting me from potential harm, for example I gradually stopped playing some sports during my PE lessons at school due to risk of rupturing my aorta or damaging my eyes.

There were also often things that I could do with my joints that I didn’t know others could do until my classmates were impressed by my bendiness, sensible adult Shona now knows that doing such tricks is not good for me but at the time it definitely seemed fun to freak everyone out. It was probably not until my teens that my true differences stood out though, I was always much slimmer than my peers and my long legs and arms were clear to see. I was bullied for this at the time but now I get only compliments about my long legs from people who wish they had them, of course they don’t know the reason behind them. Growing up I always thought that I would stand out all my life, I would never fit in and be like anyone else but now I am past those years I can see that standing out doesn’t have to be a bad thing. I get stares all the time when I’m whizzing around in my powerchair and back then it would have really bothered me but these days I just acknowledge that people can be curious and I whizz off and get on with my day!

Growing up is tough for everyone with all those with hormones racing around and whilst us bendies may have a few additional battles to face I know for sure that when you look back things usually don’t seem so bad!

– Shona (HMSA Marfan Ambassador)

vEDS Awareness

Posted By HMSA Social Media Coordinator,

It’s Ehlers-Danlos Awareness Month!

Here’s a shout out to all those living with vascular Ehlers-Danlos syndrome!

It is a connective tissue disorder caused by known genes, and symptoms include:
– thin, translucent skin that bruises easily.
– very fragile arteries, gut wall, and uterus. These may rupture which can be life threatening, and so need monitoring.
– a characteristic facial appearance with protruding eyes, thin nose and lips, sunken cheeks, and a small chin.
– joint hypermobility usually in the hands (can be elsewhere)

The level of bruising is much more severe, and the skin much more translucent in vEDS than in hEDS or cEDS.

It’s actually quite common for people with vEDS not to know they have it until something drastic (like an anuerysm or organ rupture) happens. Early diagnosis is really important as it can mean that lifestyle can be adapted to reduce risks, and monitoring can pick up issues and address them before they can become life-threatening.

cEDS Awareness

Posted By HMSA Social Media Coordinator, May 7, 2017

It’s Ehlers-Danlos Awareness Month!

Here’s a shout out to all those living with classical Ehlers-Danlos syndrome (cEDS)!

It is a connective tissue disorder caused by known genes and is characterised by:
– very soft and stretchy skin which splits, tears and bruises very easily, and doesn’t heal well, often leaving wide papery scars.
– Internal organs which herniate or prolapse
– joint hypermobility in all joints (with the associated dislocations, pain and fatigue)

The joint related issues can mirror the issues found in hEDS and are treated the same way, although anything that impacts the skin may need a slightly adapted approach – for example extra soft linings for splints and trying to making sure that exercises don’t split or tear the skin.

It’s important to note that slightly fragile, stretchy skin and abdominal hernias are common in hEDS, but these issues are much more marked in cEDS.



Posted By HMSA Social Media Coordinator, May 6, 2017

Today is Wishbone Day to raise awareness of Osteogenesis Imperfecta, one of the hypermobility syndromes that we support.

Head over to the Brittle Bone Society’s page and show your support

It may be Ehlers-Danlos awareness month, but don’t worry, we haven’t forgotten everyone who has other hypermobility syndromes!

Posted By HMSA Social Media Coordinator, May 4, 2017

By raising awareness of EDS in the right way, we can also benefit people with HSD (previously called JHS or BJHS), Marfan syndrome, stickler syndrome, pseudoxanthoma elasticum, and others.

For example, did you know that recommended management of hypermobility is exactly the same in hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders and many of the other hypermobility syndromes too? – treating the symptoms, using pacing and exercise to help manage pain and fatigue, needing to find the exercise that works for the individual so they can build muscle without injury, careful and considered use of joint supports and mobility aids where appropriate, and surgery as a last resort.

The associated conditions that professionals are advised to look out for (like MCAS, POTS and gastroparesis) are also the same for both hEDS and HSD.

The information provided by the HMSA should not take the place of advice and guidance from your own health-care providers. Material in this site is provided for educational and informational purposes only. Be sure to check with your doctor before making any changes in your treatment plan. Articles were last reviewed by our Medical Advisors as being correct and up to date on 5th June 2004.

Please be aware that information posted on the discussion boards is the opinion of the authors and has not necessarily been approved or endorsed by the medical advisors.