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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.

#EDSAwarenessMonth

#WishboneDay

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.

It’s Ehlers-Danlos awareness month! #EDSawarenessmonth

Posted By HMSA Social Media Coordinator, May 3, 2017

So today let’s look at hEDS.

hypermobile Ehlers-Danlos syndrome is:
– a genetic connective tissue disorder which affects each individual differently. The gene(s) haven’t been identified yet.
– generalised joint hypermobility (dislocations are common although not everybody with hEDS dislocates, joint instability, pain and fatigue)
– slightly stretchy or soft skin, which bruises easily.*
– a slightly increased risk of hernias and prolapses*
– some individuals will have ‘marfanoid habitus’ – a particular body type with features that include an armspan that is greater than one’s height, long fingers and thin wrists.

*these symptoms may cause problems, but are less severe than commonly seen in vEDS and cEDS – we’ll cover those in the next few days!

Managing hEDS is tricky. Being as strong as possible is essential – but trying to build strength when you are easily injured and get overwhelmingly fatigued simply isn’t easy! Getting it wrong can often set us back instead of helping, so it can take a fair bit of trial and error to find what works for the individual.

So please be patient and supportive towards anyone struggling to find their way to live well with hEDS.
For more information see our website: http://hypermobility.org/

Huge Congrats Erin! :D

Posted By HMSA Social Media Coordinator, May 1, 2017

Huge congratulations are in order for 8-year-old Erin, who completed a 1.5km swim (60 lengths) non-stop on the 8th April in…wait for it…just 37 minutes!! Elite swimmer territory, and through this Erin has raised a (running) total of £544 for the HMSA – an outstanding achievement.

Erin has a rare genetic change known as Spondyloepimetaphysealdysplasia with Joint Laxity (SEMD-JL) for which she has undergone various medical treatments. Her favourite way of managing this, is by swimming! To read more about Erin’s story, and to donate, go to her Virgin Money Giving page:

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=Erin2017&pageUrl=2

We hope you will all join us in saying a big well done and thank you to Erin – an amazing young lady!


Disclaimer
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.