promote

promote

We're creating the #ysuNetwork, and as it grows, this hub will grow and change in structure.
If you're part of the Facebook or Twitter ysuTribe, we'll do all we can to publicise your pages, blog, cause, fundraising efforts, event, talent hobby or even small independent business  - for free.  Why? 

Because we want to empower Disabled people, some who may be bed or house bound, and help them achieve whatever it is they've put their minds to, along with giving a hand to those without any disabilities or illnesses who are also supporting the project. 

Simply put, it's #SpoonieSolidarity...

Causes

Mainly individuals are unable to get the treatment they need on the NHS (UK) or covered by their Health Insurance or providers and are forced to suffer of try to raise cash. Causes is about fundraising.  

We've got room for everyone in need, so if you're fundraising, or you know someone who is,
email details to promote@youseeus.org including links to all social media.

This young woman was fighting 
for her lifeThe next 
skull slip could have killed her.

new photos coming soon! 

Mel's Mission To Live

As well as having Ehlers-Danlos, Mel, in her 20s, has severe Craniocervical Instability (CCI) and severe instability in her spine. Her skull slipped and crushedher brainstem.Cerebrospinal Fluid couldn't flow properly, building up causing disfiguring facial swelling and pain. Sitting caused up to 40 seizures a day, so she lived for years on a stretcher, neck braced.

There was hope. Surgery...But complications  of EDS/HSD meant Mel couldn't find a surgeon in the UK  and the NHS refused to pay for surgery overseas.

Melanie has raised over £150,000 by arranging various events. Currently working alone, despite being so ill and recovering from gruelling operatioins, her campaign, Melanie's Mission To Live is a testament to how desperately this young woman is fighting for her life.  

Having survived two major spinal surgeries in Spain, Mel still needs around £20,000 to pay for her medical flight home. Go directly to Mel's website or gofundme page, or connect with the campaign through Mel's social media.  Look out for #MMTL banners around the site too!

Blogs & Awareness

Invisible Zebra

Written by Charlotte, who is in her 20s, her site's all about educating and raising awareness.  

She says "Join me on my journey, through the good days and the bad, to make the invisible, visible.  If I can help just one person, then my blog has served it’s purpose."

With over 2000 followers on her Facebook page, we'd say she's helped more than one person, and will help many more in the future!

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Believe In Bethanie

Believe In Bethany has remarkable roots in a tragic and unacceptable situation.  

Now dedicated to spreading awareness of Ehlers-Danlos and its associated conditions, it was originally set up to free Bethanie, while she was held in a psychiatric unit for two years after being misdiagnosed with an eating disorder

The unit responsible ignored the diagnosis of a world respected EDS/HSD specialist, and administered treatment resulting in liver damage. Bethanie actually needs a tube  in to her heart for nutrition (TPN) as her gastrointestinal system doesn't work properly.  

Despite all of this, Beth remains a positive force in the EDS community, and we predict great things for this young lady's future! Have a look at the website,or their social media. 

Tasha's Fight Against EDS

Tasha took to Facebook to share her experiences and says some words many with Invisible Illnesses will identify with.

"Because of EDS I've lost many friends as they can't understand my overwhelming fatigue or cope with the variation and level of disability I have. But I have the most wonderful friends who I've met as they have EDS too."  

She's got nearly 1000 followers.  Why don't you join them?

Online and Offline

Groups and bodies that are working in the real world and online to implement medical changes. 

EDHDCymru (Wales, UK) 

Ehlers-Danlos & Hypermobility Disorders Cymru is a start-up body building an online Advocacy service (though they have advocated in hospitals too).  

One of the first #ysuNetwork members, they're also a proud partner of Fair Treatment For The Women Of Wales and EDHDC is meeting with key, senior NHS staff in the real world, while working on a huge website and online initiatives. 

Head over to their Facebook page to show your support and to check out the information they're supplying. There are important articles people with EDS/HSD should print for medical teams there. 

Zebras on Parade

Zebras On Parade's website contains loads of information on Connective Tissue Disorders, petitions, research projects and many, many more things.  

They're all about spreading awareness and helping people find out how they can get involved in research - or even use apps they may find interesting. There are pieces written about things beyond Ehlers-Danlos, including medical and psychological conditions caused or associated with Connective Tissue Disorders. 

If you like genes and genetics, you'll find plenty to read on this website

Keep your eyes peeled for additions to this page. 

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