Frances Heley

Raising awareness of Ehlers-Danlos Syndrome. EDS- the zebra it ain't rare! 🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓 😀

[Frances Heley @FrancesHeley]

https://t.co/ApRlecEbkO
Frustrated by the lack of support for Ehlers-Danlos Syndrome, I've written this song. If you like the song, please share. If you don't like the song, please share! 🦓❤️@bbchealth @BBCLookNorth @TheEDSociety #fyp #Health @LeedsNews

[Emma Reinhold @DrEReinhold]

https://t.co/5T4Fwd80kN
Announcing the most exciting opportunity for GPs this year!
[Drumroll] @ehlersdanlosuk are holding an afternoon event for FREE (thanks to a generous donor). I'm chairing alongside an amazing faculty. Workshop-based practical learning by GPs for GPs!

[Hypermobility MD: Dr Linda Bluestein @BluesteinLinda]

Most doctors, sadly, do not understand MCAS or keep an open mind to how the immune system is interacting with the connective tissue and or pain signaling. They’re all connected! 🧬❤️‍🩹 I talk about this a lot on my #BendyBodiesPodcast.

https://t.co/xD6YOfHZd7

[Frances Heley @FrancesHeley]

Faded, but damning. A&E gave me this when I went for a suspected cranial leak and EDS. They diagnosed me with FND down the telephone and sent me away with this sheet. Words fail me...#hypermobility #fnd @bbchealth @H2OhTwist #EDS #chronicpain #chronicillness

[Frances Heley @FrancesHeley]

It's bad enough trying to self manage the symptoms of Ehlers-Danlos Syndrome. It's made worse by a medical system that leaves thousands of people with EDS devoid of medical support. #ChronicIllness #ChronicPain @bbchealth @BBCLookNorth #Health #hypermobilty

[Cherylee Houston @cheryleehouston]

Sat outside Parliament being refused to deliver refused to deliver John Prong’s book about benefit deaths and have a meeting about the proposals about future cuts #TheDepartment #NoMoreBenefitDeaths

[Frances Heley @FrancesHeley]

Trying to raise awareness of Ehlers-Danlos Syndrome and the lack of medical support. This basic video was made to try and get an opening on the Today programme. Didn't succeed, but highlights a lot of the issues. #health @bbchealth #ChronicPain @BBCLookNorth

[Allyson Bontempo, Ph.D. @acbontempo]

Do you have #EDS, #endo, #fibro, #IBS, #LongCovid, #lupus, #MECFS, #POTS, or #vulvodynia? I’m looking for patient feedback on a manuscript I’m working on on the psychological harm of #medicalgaslighting. DM me if interested!

[Frances Heley @FrancesHeley]

@blbuckley63 Thank you! x

[Frances Heley @FrancesHeley]

My final Ehlers-Danlos awareness event at Parkrun for this year. Parkrun has been so accommodating in helping raise awareness of the condition. 🦓🦓🦓 😀 #parkrun #eds #ehlersdanlos #ChronicPain #Health #chronicillness #mentalhealth

[Frances Heley @FrancesHeley]

Ehlers-Danlos Syndrome. Totally neglected. 😥 🦓
#ChronicPain #health #HealthAndWellness #fyppppppppppppppppppppppp

[JellyBabyKid @JBKid7]

How many other conditions don't
- ever see a consultant
- have a care & treatment plan
- have annual reviews
- have interactions with HCP who say "what's that" or "I don't believe in that" & are allowed to ignore NICE guidelines

#GreatestMEdicalScandal
#MECFS
#LongCovid

[Frances Heley @FrancesHeley]

@JBKid7 Ehlers-Danlos Syndrome. Completely neglected.

[Frances Heley @FrancesHeley]

Frustrated with the lack of support for Ehlers-Danlos Syndrome, I've written a song 🎵 which will be launched next month. Also a fundraiser for Ehlers-Danlos Support UK. Watch this space! 😀 #health #chronicillness #ehlersdanlos #ChronicPain @cheryleehouston

[Frances Heley @FrancesHeley]

A lifetime battling with chronic pain and injury. Spent £1,000's on countless physios, chiropractors, osteopaths, and podiatrists. Until recently, not one mentioned EDS. More awareness needed. #chronicillness @Ehlersdanlos #Health #mentalhealth

[Frances Heley @FrancesHeley]

Another summer spent raising awareness of Ehlers-Danlos Syndrome at parkrun. They have been hugely supportive. ❤️ @cheryleehouston @parkrunUK #health #chronicillness #ChronicPain @TheEDSociety

[Frances Heley @FrancesHeley]

#NewProfilePic

[Frances Heley @FrancesHeley]

THANKYOU to Bannatyne Health Clubs, who helped publicise Ehlers Danlos Syndrome and the EDS UK petition when I walked the Bannatyne Trail. Last week, an encouraging meeting at Westminster and a trip to no.10. ❤️ @Bannatyne @cheryleehouston @TheEDSociety

[Physiocure Physiotherapy Clinic Leeds | Est. 2000 @Physiocure1]

Please share 🙏

[Frances Heley @FrancesHeley]

The Pathway to Parliament team have treatment with Anna Higo at Physiocure in Leeds. An HSD /EDS specialist who understands the complexity of the condition. A huge support to me. Thank you.❤️ @Physiocure1 @Bannatyne @TheEDSociety @StuartAndrew

[PoTS UK @UKPoTS]

Today is ⭐️#PoTSAwarenessDay⭐️

✨PoTS on a Page - GP Guide✨

If you are a healthcare professional please download this guide which summarises information about #PoTS

For those seeking a diagnosis or attending medical appointments, please take this along to increase knowledge & awareness of PoTS.

PDF link for this information sheet: https://t.co/twWVJiVrAM

#TeamGP #MedTwitter #HCP #MECFS #EDS @HMSACharity @RCPhysicians @theRCN @DrNeenaJha @DrSdeG @GSTTnhs @BMA_GP @rcgp_ni @DrNighatArif