A woman from Eccles living with a rare condition which has caused her to nearly lose her life several times is completing the Great Manchester Run to raise awareness.
Emily James, 23, who suffers from Ehlers-Danlos syndrome (EDS), a rare inherited condition that affects the connective tissue in the body, will be completing the challenge to raise money for the condition’s support charity.
Throughout her life, Emily has dealt with serious joint dislocations, resulting in more than 20 different surgeries, leading her to nearly lose her life several times.
After surgery on her jaw in 2013, she had to spend a full year in Royal Manchester Children’s Hospital, due to a bleed and large blood clots in her face. Emily received a lifesaving Tracheotomy which she now breathes and talks through, yet struggles with extremely painful and limited mobility.
Emily said: “I’ll be running for those that have EDS and fight every single day. I’ll be running for the little ones that have only just begun their journey with EDS and lastly, I’ll be remembering all those that are sadly no longer with us..that put up a brave and beautiful fight but never got to truly live. They will never be forgotten.”
While on her way to a training session for the challenge, Emily was involved in a car accident resulting in a neck injury and the dislocation of her shoulder, leaving her with extreme weakness and numbness in her arm.
She commented: “It put a big obstacle in my way when it’s come down to preparing for the run with weeks off training…but I won’t let it stop me getting to that finishing line on the 21st of May.”
Emily is the youngest sibling out of four and the first to be diagnosed with EDS, resulting in her Mum being diagnosed on the same day, despite suffering with the symptoms for more than 40 years.
Karen, Emily’s mum, 55, said: “Emily doesn’t want anyone else to go through the mental torture that herself, her siblings and I have been through because it was hell.
“One of the main purposes of raising awareness is about Doctors and professionals understanding EDS. All of my children have suffered, from being misdiagnosed with conditions like Rheumatoid Arthritis, to not being believed at all.
“Because they didn’t understand what was going on with Emily’s joints, they just chose to disbelieve it.
“If we could educate others, it would mean the absolute world to us and we would feel like we’ve achieved what we set out to do.”
She will be completing the challenge with her brother, brother-in-law and cousins who she describes as “an incredible support network”.
All funds raised will be going directly to Ehlers-Danlos Support UK, which will provide support to families and help the charity raise vital awareness to schools and hospitals, and ensure that all those affected by this condition are provided with the right care and diagnosis before it’s too late.
To donate to this incredible cause, you can find Emily’s JustGiving page.
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