Young councillor suffers 10 dislocations daily due to rare health condition

A councillor who suffers from a rare disease which leaves her at risk of dislocating joints whenever she moves has spoken out to raise awareness of the condition.

It took years for Katie Pragnell, 27, to find out she suffers from Ehlers Danlos Syndrome.

She cannot remember the last time she wasn't in pain and chronic fatigue and skin splitting are among symptoms.

While many people would have to rush to a hospital following dislocations, Katie - who now has to endure up to 10 dislocations every day - has learned how to often fix the issues herself by pushing them back in.

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The Labour councillor for Clarkston, Netherlee, and Williamwood wants to raise awareness of the condition as May marks Ehlers Danlos Syndrome and Hypermobility Spectrum Disorder (EDS/HSD) Awareness month.

Katie said: "It is about managing symptoms on a daily basis. There are some days when my joints are bad and I use a wheelchair or walking stick. I don't know the last time when I wasn't in pain. All my life I have been in pain."

The NHS describes "Ehlers-Danlos syndromes (EDS) as a group of rare inherited conditions that affect connective tissue. "

General everyday movements can cause a dislocation due to hypermobility.

There is little support available on the NHS according to Katie who pays for a private chiropractor, which has helped get the number of daily dislocations down from 25 to 10.

Pointing out her wrist is currently dislocated, she said: "It could be a finger, toe or my full hip.

"I have been taught a technique to put my joints back. If they don't go in - I go to A&E."

Katie said: "EDS/HSD Awareness Month is the perfect time to highlight that there are no formal care pathways for those living with the condition in Scotland. When I was diagnosed with this genetic condition, I was discharged from NHS services with a pamphlet.

"I was told that throughout my life I would need constant physiotherapy, however this service wasn't available in NHS Scotland and that there was no specialist services to help manage my condition."

Councillor Pragnell believes those living with the condition are "being let down" by health services in Scotland and calls on the Scottish Government to work with Ehlers Danlos Support UK to understand the condition and "develop appropriate care pathways."

It has taken years for Katie to learn what was causing her symptoms.

At the age of 13 she was misdiagnosed with ME and referred to mental health services CAMHs after a range of health issues arose including getting glandular fever.

The East Renfrewshire Council convenor for Social Care & Health added: "My mum had to quit her job and home educate me. The school would send work home."

She points out unfortunately her school at the time Williamwood High didn't provide enough support.

Before being diagnosed with Ehlers Danlos Syndrome, Katie learned she also another condition called Postural tachycardia syndrome (PoTS), which was identified while she was aged 17.

People with PoTs see their heart rates increase very quickly after getting up from sitting or lying down according to the NHS.

Getting help with PoTs then led to Katie's eventual diagnoses with Ehlers Danlos Syndrome at 21.

It was also revealed her Mum had it to a lesser degree.

Research shows it takes a long time for people to learn they have the syndrome.

Katie pointed out: "Researchers at the University of Edinburgh's institute of Genetics & Cancer have published research, which will be available from 10th of May, which shows the average timeframe from symptoms presenting to diagnosis of hypermobile EDS is almost 20 years."

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