Ehlers-Danlos Support UK

Ehlers-Danlos Support UK

@ehlersdanlosuk

Followers15.7K
Following11.8K

EDS UK is committed to changing the futures of people with Ehlers-Danlos syndrome (EDS) and HSD. With awareness and early diagnosis we can change lives.

Borehamwood, London
Joined on October 09, 2012
Statistics

We looked inside some of the tweets by @ehlersdanlosuk and here's what we found interesting.

Inside 100 Tweets

Time between tweets:
12 hours
Average replies
1
Average retweets
7
Average likes
23
Tweets with photos
45 / 100
Tweets with videos
5 / 100
Tweets with links
0 / 100
Recently the eligibility of who may get a #BlueBadge has changed; previously only those with a physical condition were eligible but now includes #mentalhealth conditions such as anxiety, stress, mental health issues, and conditions such as autism. https://t.co/flAkJWuLyy https://t.co/fu3TInJpbF

Recently the eligibility of who may get a #BlueBadge has changed; previously only those with a physical condition were eligible but now includes #mentalhealth conditions such as anxiety, stress, mental health issues, and conditions such as autism. https://t.co/flAkJWuLyy https://t.co/fu3TInJpbF

Children can present with symptoms of #hEDS/ #HSD, including abdominal symptoms & growing pains & neurodevelopmental disorders such as hyperactivity, inattention, #dyspraxia, #ASD, sleep & food issues, emotional problems, hypersensitivity & anxiety https://t.co/srJ7cZEWBY https://t.co/4c0j7BeMfH

Children can present with symptoms of #hEDS/ #HSD, including abdominal symptoms & growing pains & neurodevelopmental disorders such as hyperactivity, inattention, #dyspraxia, #ASD, sleep & food issues, emotional problems, hypersensitivity & anxiety https://t.co/srJ7cZEWBY https://t.co/4c0j7BeMfH

Dr. @EmmaReinhold is joined by @RCGP Chair Professor Helen Stokes-Lampard, to discuss diagnostic clues which can enable you to recognise #EDS as well as #mastcell activation syndrome and #autonomicdysfunction https://t.co/8SZrUCkHKg #MedTwitter #MedEd

Many people do not fully meet the new diagnostic criteria for #hEDS but their #hypermobility still causes problems for them. They may experience pain, dislocations, be prone to injury, have curvature of the spine, and degenerative joint and bone disease https://t.co/Q7An4Dzkpx

A toolkit for GPs to help understand, diagnose, and manage/refer for hypermobile #EhlersDanlossyndrome (hEDS) and #hypermobility spectrum disorders can be found @rcgp https://t.co/8C4FSB0FU5 #MedTwitter #MedEd

Hypermobile #EhlersDanlossyndrome ( #hEDS) is thought to be the most common genetic #connectivetissuedisorder. It can be inherited from a parent or someone can be born with a new mutation, occuring in their family for the first time https://t.co/Q7An4Dzkpx #MedTwitter https://t.co/mGidlsazBx

Hypermobile #EhlersDanlossyndrome ( #hEDS) is thought to be the most common genetic #connectivetissuedisorder. It can be inherited from a parent or someone can be born with a new mutation, occuring in their family for the first time https://t.co/Q7An4Dzkpx #MedTwitter https://t.co/mGidlsazBx

@m_no1111 @H2OhTwist @thelionmachine @Shadow2Serenity @TheEDSociety @ehlersdanlosuk I'm less bendy post-menopause. I also have osteoporosis, and widespread osteoarthritis as a result of EDS. Diagnosed at 54, I'm entering what they call the "stiff" stage. Lots of PT helps.

This week was #InvisibleDisabilitiesWeek. 

As someone with an invisible disability I've often thought about what visibility means.

Whether we have an invisible or visible disability, we're often invisible from society.

More here: https://t.co/BTxWxvXNIe

#neisvoid #disability https://t.co/9pPbyj71rL

This week was #InvisibleDisabilitiesWeek. As someone with an invisible disability I've often thought about what visibility means. Whether we have an invisible or visible disability, we're often invisible from society. More here: https://t.co/BTxWxvXNIe #neisvoid #disability https://t.co/9pPbyj71rL

We have a NEW project page!

This research explored experiences of healthcare from parents' perspectives in relation to their children with diagnosed/suspected hEDS or HSD.

https://t.co/Y1MIrxW3iV

@laurenmpurdy @GemmaSPearce @KayJulier @DrEReinhold @ehlersdanlosuk @HMSACharity https://t.co/QE0CiY1x6D

We have a NEW project page! This research explored experiences of healthcare from parents' perspectives in relation to their children with diagnosed/suspected hEDS or HSD. https://t.co/Y1MIrxW3iV @laurenmpurdy @GemmaSPearce @KayJulier @DrEReinhold @ehlersdanlosuk @HMSACharity https://t.co/QE0CiY1x6D

Dr. Lesley Kavi of @UKPOTS joined us for a discussion of postural tachycardia syndrome (PoTS) with tips on how it can be managed https://t.co/FoY8U7R512 #PotsAwarenessDay

Malfunctioning of the part of the nervous system that controls involuntary bodily functions (e.g. breathing, heart rate) is common with #hypermobileEDS / HSD. Symptoms include fast heart rate coupled with low blood pressure, digestive and bladder problems https://t.co/BwMByJytxW

Many people with hEDS/HSD experience #chronicfatigue. Staying hydrated is vitally important when trying to fight fatigue as it helps to ensure a good flow of blood to your brain. This is especially important if you #PoTS or #orthostaticintolerance https://t.co/FKIW5UvuGk https://t.co/PQ6PSDyffB

Many people with hEDS/HSD experience #chronicfatigue. Staying hydrated is vitally important when trying to fight fatigue as it helps to ensure a good flow of blood to your brain. This is especially important if you #PoTS or #orthostaticintolerance https://t.co/FKIW5UvuGk https://t.co/PQ6PSDyffB

Our local online support groups and meet-ups are a great place to chat with and meet others. The Living Alone support group will meet today Friday, October 23, 7:30pm – 9:00pm on Zoom.
Zoom Link: https://t.co/vPtgycqpIM

#EhlersDanlosSyndrome #EhlersDanlos #Hypermobility https://t.co/cT8lup95HA

Our local online support groups and meet-ups are a great place to chat with and meet others. The Living Alone support group will meet today Friday, October 23, 7:30pm – 9:00pm on Zoom. Zoom Link: https://t.co/vPtgycqpIM #EhlersDanlosSyndrome #EhlersDanlos #Hypermobility https://t.co/cT8lup95HA

Do any of our members have an experience with a paedatric #physio or #rheumatologist in and around #Bolton?

Next year, this co-captain is aiming to raise by then for both @mndassoc & @ehlersdanlosuk to raise awareness for both charities as one is close to my heart and the other is for everyone including the legend, the great @Rob7Burrow for #3peakschallenge @LDSuperLeague @leedsrhinos https://t.co/2aWnFV9nt2

Quoted @_amytompkins

#BigFunRun2019 Agony but we did it, also reached our £300 goal for @ehlersdanlosuk ! @BigFunRun https://t.co/cjgf4510bi

#BigFunRun2019 Agony but we did it, also reached our £300 goal for @ehlersdanlosuk ! 

 @BigFunRun https://t.co/cjgf4510bi

This day a year ago, was the hardest thing I’ve ever done. I raised money for @ehlersdanlosuk by walking 5K. May not seem a lot to people, but when ya joints dislocate by getting out of bed, it’s tough 😂🦓 @BigFunRun https://t.co/u5xiMULKdL

Thank you for supporting me, @strataminis, and for helping raise money for the charity @ehlersdanlosuk so that more research and awareness can be put into Ehlers Danlos Syndrome and its other associated conditions. It means the world and more 💜🦓💜

Send love across the miles! ✉️ The EDS UK 2020 Christmas cards are now online - support and help make our invisible visible https://t.co/oFfbj4twE2 #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder https://t.co/8Fj0FITJNl https://t.co/fqoHB4vkgN
2

Send love across the miles! ✉️ The EDS UK 2020 Christmas cards are now online - support and help make our invisible visible https://t.co/oFfbj4twE2 #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder https://t.co/8Fj0FITJNl https://t.co/fqoHB4vkgN

Shop and purchase today at https://t.co/Z3b6QdkMfE and on Facebook https://t.co/iEYUY1awIH

Jessica's making the invisible visible!

Jessica creates invisible illness products, from posters, to t-shirts and lanyards - all in support of invisible illnesses! Jessica is donating 10% of the sales of all products to EDS UK. https://t.co/joWXMWSnOg

Jessica's making the invisible visible! Jessica creates invisible illness products, from posters, to t-shirts and lanyards - all in support of invisible illnesses! Jessica is donating 10% of the sales of all products to EDS UK. https://t.co/joWXMWSnOg

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