MY DISLOCATED LIFE
This teenager is doing all she can to hold life together…
Jade Gadd, 17, Durham
Jade was diagnosed with Ehlers-danlos Syndrome (EDS) in 2014, and life had been a tough challenge since then.
The rare tissue condition means her joints dislocate almost every time she moves.
It often leaves the teenager bed-bound, but she is determined to live a full life.
Jade even wants to serve as an example to others and is setting up a support group for young disabled children so
Helping others is so important
they have other people they can talk to.
Feeling isolated is something Jade knows a lot about. Recently, she was trapped in her bedroom for three weeks during a tough flare up of EDS.
Sometimes she can spend weeks in the dining room because she cannot get upstairs.
Jade, along with her parents, Roz and Tony, have failed to get a lift installed and are now raising money to have the downstairs living accommodation adapted.
‘What I’m hoping is even when I’m ill we can have a set up so I can get out in the wheelchair and get to school and do whatever I want,’ Jade explains.
‘I think it would make a big difference. I would be able to go to school more and be part of family life. I’d be able to have a more full life.’
Mum Roz had a less severe form of EDS and is in complete awe of her daughter.
‘I don’t know how she does it,’ she says. ‘I have dislocations, but not like her, and they turn me into a baby. She’s having it all the time and she just deals with it. She has a mind of steel.’
Jade is currently using an AV1 telepresence robot when she is too ill to go to school. The robot was made by Norwegian company No Isolation as a way for people with long-term illnesses to connect with their peers when they are not physically able to. ‘I know there’s no cure for EDS, but I know I can find a way to live a normal life,’ Jade says. ‘We’ll keep raising the money. And if I can help other young people, then that’s even better.’ Visit Facebook/jadeaid to donate to Jade’s cause.