Ambassador Lucy and Tonia Launch Project Hope

Ambassador Lucy and Tonia - Project Hope Launch

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Lucy and Tonia (Lucy Watts and Antonia Payne-Cheney) are two young girls with life-limiting complications of Ehlers-Danlos Syndrome, type 3. EDS causes stretchy and fragile tissues due to a defect in the protein collagen which is like the glue of connective tissue.

This causes hypermobile joints ("double jointedness"), joint dislocations, fragile, stretchy skin which heals poorly and scars badly, autonomic nervous system dysfunction, gut, bladder and heart problems, blood pooling when upright, and numerous other complex and widespread complications. We have POTS and intestinal failure and the latter requires us to be fed straight into the bloodstream (TPN) via lines in our hearts. We also have other bags and tubes and are dependent on IV medication. 

We are setting up Project Hope to raise awareness of EDS, POTS and intestinal failure, to fund research via fundraising for the Pseudo Obstruction Research Trust (PORT), doing small scale research into EDS, POTS and intestinal failure and to help to develop protocols and documents to assist in the care of EDS, POTS and IF patients and to help sufferers understand their condition. 

Go to our website to learn more

If you want to make a donation to PORT please go to our fundraising page

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Follow us on Twitter @LucyTonia

Pseudo Obstruction Research Trust

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Author: Hannah Attenburrow

Date: 19/03/2015

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