Tribe Who?

The ysuTribe is everyone who Likes and follows us on Facebook and Twitter, and contributes features, photos, videos and interviews to the project.

Many members have EDS/HSD or other Invisible Illnesses and disabilities (The Stripey and The Spoonies). Some have no illnesses (The Stripeless). 

Then there's the #BTST* who work anonymously and for free. Most of us have EDS/HSD and lots of associated illnesses too.
Children and adults are kept in psychiatric units against their 
will after being misdiagnosed as 
having  Eating Disorders, while their Gastrointestinal Issues, caused
by EDS/HSD are ignored and dismissed. 


Why the Tribe?

Regularly accused of hypochondria, Fabricated Illnesses  and other psychological disorders by medical professionals who have no real knowledge of EDS - and who refuse to research it - as a collective, we've had enough and the #ysuBTST started asking #WillYouSeeUs in September 2016. 

While medics are busy looking at the wrong illnesses, patients are degenerating, being dismissed and damaged, some dying.   

On average, it takes nearly a quarter of a century to get a confirmed EDS/HSD diagnosis, despite symptoms usually being present for years (pain, vomiting, nausea, dislocations, bruising, etc). 

Prompt and proper diagnosis and management can make the difference between permanent physical damage or even death, and the chance at living a life - and not just existing.
The institutional abuse people with EDS/HSD experience globally is not stopping. 
Despiteincreased scientific research
medical attitudes are getting worse...


Power In Unity

EDS/HSD are common under-diagnosed, debilitating and life-threatening connective tissue disorders. There are many horrible associated conditions. There is no cure, but prompt diagnosis and proper management lessens their damage. 

The EDS/HSD Community regularly comes together to help other Stripeys who have had their children taken away due to false child abuse allegations, when their children's injuries are undiagnosed or ignored EDS/HSD, for example.

We're also worried the new diagnostic criteria (made public March 2017) will complicate things for us and make getting diagnosed and treated even harder. We need your help now more than ever.
Connecting the campaigning, blogging, fundraising Spoonies to create the #YSUNetwork and amplify our messages.

Email us at promote@youseeus.org to be on the page.
Stripey, Spoonie or totally healthy, how you can team-up, take part and become part of the #ysuTribe.

We're not asking for personal donations - just your input, clicks and shares. 
Information on the anonymous and unpaid Behind-The-Screen-Team.

Who we are, what we're doing, and what we're aiming for over the next three years, as we shoot for 2020. 
Share by: