THE mother of a woman who died battling an incurable condition has spoken out in a bid to raise awareness of the rare disorder.

Gail Barber, of Trimdon Village, said she felt let down by services aimed at helping her daughter, Aimee Barber.

Miss Barber fell ill at nine and was in intensive care for a week at the University Hospital of North Tees.

The Northern Echo: Aimee Barber was diagnosed with Vascular EDS at tenAimee Barber was diagnosed with Vascular EDS at ten

She was diagnosed with vascular EDS at 10 and battled the condition until she died aged 28.

Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue.

Vascular EDS (vEDS) is a rare type of EDS and is often considered to be the most serious.

It affects the blood vessels and internal organs, which can cause them to split open and lead to life-threatening bleeding.

Mrs Barber said: "Aimee was so strong, she had all these pains, but she just got through them.

"The love and kindness she had to give was unreal, it didn’t matter what she was going through she always wore a smile.

"In 2017, she died of a cardiac arrest. They worked on her but she had a blood clot. I know she would still be here if they did more tests.

"All we wanted was for people to understand and put a care plan in place for her but we were passed on to different people.

“I felt let down by all the services, I’ve been in touch with the ambulance service who have apologised as a paramedic complained he was diverted from two call outs for Aimee."

Daryen Lemmon, of the North East Ambulance Service, said: “We take all complaints seriously and complete a full investigation so that we can improve our service and explain the circumstances around our care to the patient or family concerned.

"We invited Mrs Barber to present her story last year. In light of that presentation, we made a commitment to raise awareness of Aimee’s rare condition amongst our staff, in particular for ambulance crews and clinicians in our operations centre, so that they better understood it.

“We have offered our unreserved apologies to Mrs Barber for any upset caused by any comments made by one of our crews. Understandably, this has over-shadowed the appreciation that Mrs Barber has for the other times we went to help her daughter. We expect our staff to treat all patients with dignity, respect and compassion and we are grateful to Mrs Barber for raising her concerns and giving us an opportunity to respond directly and learn from her experience.”

Mrs Barber is also in talks with Skerne Medical Group and the University Hospital of North Tees to discuss how her daughter's death could be prevented as feels they could have also done more.

Volunteer area coordinator at Ehlers-Danlos Support UK, Fiona Edden, said: "The Ehlers-Danlos UK charity website offers information – not just for patients, but for health care practitioners too.

"EDS presents as very diverse across the whole EDS community, so how it affects one person will be completely different from another.

"EDSUK has a help and support line with a dedicated EDS nurse for those with the condition."

For more information visit