Action For Spine Instability

A patient campaign raising awareness of the inadequate treatment for craniocervical & spine instability in the UK through the NHS. @CharlieJLFitz

[Action For Spine Instability @SpineAction]

Action For Spine Instability is on the back burner whilst @CharlieJLFitz fundraises for surgery through @_chance4charlie rest assured, everything we learn on the #Chance4Charlie journey will help @SpineAction become a successful campaign. https://t.co/sr2sdmDOuY

[Charlie @CharlieJLFitz]

Please share 🧡 I am desperately fundraising for urgent, life-saving surgery abroad, I have a rare complication of #EDS. The vertebrae in my neck are collapsing under the weight of my head, directly compressing my brain stem. https://t.co/JkS3yHWfgk https://t.co/IriH0h0KPW #cci

[#actionforEDS @actionforeds]

Jemma's Life Saving Neurosurgery https://t.co/eWGJTwE9jp

[#actionforEDS @actionforeds]

Click here to support SAVING KAY organised by Andy Davie https://t.co/1upTGgo425

[#actionforEDS @actionforeds]

Sarah's through surgery !! Xx https://t.co/xQ9KaosOHe

[#actionforEDS @actionforeds]

https://t.co/T0JYA3ffFO https://t.co/T0JYA3ffFO

[chance4charlie @_chance4charlie]

This is a fundraising account for life saving surgery for @CharlieJLFitz a young women with craniocervical instability due to Ehlers-Danlos Syndrome. Charlie & her family are going to Barcelona in late January to meet with the surgeons to make a surgical plan. #cci #EDS

[Charlie @CharlieJLFitz]

Please follow my fundraising account. In late January I will find out how much I will need to raise & how long I will have to raise the funds. #EDS #EhlersDanlosSyndrome #CraniocervicalInstability #Spoonie #CCI #Zebras #Hypermobility #CranialMedullarySyndrome #Chance4Charlie

[#actionforEDS @actionforeds]

#savesamantha Samantha's operation is booked for the end of January in Arizona. Can we please #share as she hasn't yet reached her total ❤️ X https://t.co/LEqmZ055mh

[Charlie @CharlieJLFitz]

Life For Sarah Jackson Brain Surgery #CCI #EDS #ElhersDanlosSyndrome https://t.co/uxVRbReWfb

[Jennifer Brea🦒 @jenbrea]

As we each navigate challenging, often highly personal health decisions, I hope we can support each other’s efforts to self-educate and advocate, even as we continue to work together to fight for medical care and research for ALL pwme. (May those efforts reinforce each another!)

[Jeremy Vine & Daytime on 5 @JeremyVineOn5]

Is crowdfunding cheeky begging? Not in the case of single mum Samantha Smith, who just called in and is trying to raise the money to go the US for neurosurgery.

Find out more: https://t.co/Pq04oO8bPV

[#actionforEDS @actionforeds]

Yet another patient with Cranial Cervical Syndrome misunderstood and let down by the system!... https://t.co/N90cGj7Kxk

[#actionforEDS @actionforeds]

We have all been here!! It's a global issue...
https://t.co/3hU9AYO2Rh https://t.co/3hU9AYO2Rh

[Ehlers-Danlos Support UK @ehlersdanlosuk]

"For me EDS is a constant battle between where I am, and where I want to be."

EDS can have an impact on #mentalhealth. Living with chronic illness and pain can be extremely challenging. @chr0nicallycute shares her story. #UKCharityWeek

#MadeatUni #EhlersDanlos #EDS

[Charlie @CharlieJLFitz]

#Nightingales #Spoonies #ChronicIllness communities can you please help spread the word for #SaveSamantha. Samantha is a lovely young mum & trained Psychotherapist. She needs life saving surgery which is not available in the UK. #EDS #EDSAwareness #CCI #AXI #EhlersDanlosSyndrome

[#actionforEDS @actionforeds]

Told Symptoms ‘All in Her Head’ Raising Awareness About Rare Disorders https://t.co/JNh89fhefK

[Jennifer Brea🦒 @jenbrea]

I just created a cervical spinal stenosis page on @MEencyclopedia : https://t.co/ykIqLuaQJG Please help add to/improve it.

This is why MEpedia is so important. It helps to connect our literatures and unearth, connect what has been lost or forgotten.

#nightingales

[Jennifer Brea🦒 @jenbrea]

New page: Cervical Medullary Syndrome. Looks like a concept coming out of the EDS literature. Sx can be caused by brainstem infection, inflammation, stretching or compression: https://t.co/LYqNtcNcam Do you think this is a useful category? #Nightingales