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This bit is all about other people and what they're doing in the fight against Ehlers-Danlos Syndromes, Hypermobility Spectrum Disorders and the conditions that come with these torturous illness.  

It's just the start of the #ysuNetwork...

This young woman is fighting 
for her lifeThe next 
skull slip could kill her.

Mel's Mission To Live

As well as having Ehlers-Danlos, Mel, in her 20s, has severe Craniocervical Instability (CCI). Her skull slips on her spine and her brainstem is crushed.  Cerebral Spinal Fluid can't flow properly, and builds up causing disfiguring facial swelling and pain. Sitting causes up to 40 seizures a day, so she lives on a stretcher, neck braced.

There is hope. Surgery......But surgical complications  of EDS/HSD mean Mel can't find a surgeon in the UK and she urgently needs £180,000 for surgery in the US.

Melanie has raised over £40,000 by arranging various events.  Currently working alone, despite being so ill, her campaign, Melanie's Mission To Live is a testament to how desperately this young woman is fighting for her life.  

The next skull slip could kill her. 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!

Ehlers-Danlos Cymru 

Ehlers-Danlos Cymru (Wales) is a start-up  actively supporting the online YSU campaign.

EDC 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. 
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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 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. 

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

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?

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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