It may be Ehlers-Danlos awareness month, but don’t worry, we haven’t forgotten everyone who has other hypermobility syndromes!
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
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
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 Spondyloepimetaphysealdysp
We hope you will all join us in saying a big well done and thank you to Erin – an amazing young lady!
#MarfanAwareness
Today marks the beginning of Marfan Syndrome Awareness Month, a chance to spread the word about one of the hypermobility syndromes that we support. Our Marfan Ambassador, Shona, will be leading the month and sharing her story from diagnosis to treatment in the Marfan Monday posts.
This month is also a great chance to ask any questions that you may have about Marfan so feel free to leave some in the comments below and we’ll do our best to answer them!
Shona Cobb – HMSA Marfan Ambassador
Congrats Danielle!
HMSA vlogger Danielle has had a beautiful baby girl! Congratulations!
Primrose will be 6 months this week!
Danielle gave us a few words about being a bendy mumma 
‘As a first time Bendy Mumma things are more challenging. But thanks to the wider community we have found many ways to make the world work for us. We use several types of baby slings for;
When our little lady wants to be held and Mummy’s arms are tired.
When Mummy is in her wheelchair.
In the early days of nursing.
We go to baby swim classes once a week in a hydrotherapy pool, which allows us both to play whilst strengthening our muscles. We have to do things a little differently but so far I feel by adapting the situation we are able to do everything any other Mother and Daughter would be able to do. Being Parents is so rewarding, she is such a joy. It’s incredible to be able to share her with our family and friends and we just couldn’t imagine life without her.’
Primrose was very poorly at the start of her life so was not weighed until a week old. She weighed 8 pounds and 6oz and was 19 inches long. Altogether now…AWWW!
