Bangor women with rare condition on why nobody should be left to fight on their own

Taylor Clark has had Ehlers-Danlos since birth but was only diagnosed in January 2021 after suffering from IBS for years
-Credit: (Image: Submitted)

Two Co Down women, living with a rare disorder, have issued a powerful plea that ‘nobody should be left to fight on their own’.

Mandy McCreight and Taylor Clark from Bangor both have Ehlers-Danlos Syndrome, which affects connective tissues supporting the skin, bones, blood vessels, organs and tissues.

The pair are among those raising awareness about EDS or hypermobility spectrum disorders (hEDS) in a bid to improve the diagnostic process and provide better care and support for those in need.

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For many people who have EDS the journey to diagnosis will have been a long convoluted one.. Poor awareness of the conditions amongst medical professionals means that it can go undiagnosed for many years.

It's common to be wrongly diagnosed with another condition first in an effort to find answers such as Fibromyalgia, ME/Chronic Fatigue Syndrome or IBS

EDS are genetic connective tissue disorders with body-wide symptoms which can be disabling, affecting all aspects of life. They can affect anyone and the symptoms include musculoskeletal problems, chronic pain and fatigue, gastrointestinal disturbance, pelvic and bladder problems, autonomic dysfunction and anxiety.

Thirteen different types have been classified and the most common, hypermobile EDS (hEDS), is difficult to diagnose as there is no single test. HSD presents many of the same symptoms and shares the same diagnostic challenge as hEDS.

The prevalence back in 2013 was thought to be one in 5,000. Today that's thought to be at least one in 500 and currently EDS UK has approximately 250 members from Northern Ireland, which according to the charity, is a fraction of the true number who could be affected.

Taylor has had Ehlers-Danlos since birth but was only diagnosed in January 2021 after suffering from IBS for years as she explained: "I was desperately researching for some help after trying so many diets, along with medication and various investigations, I read an article about the connection of IBS with Ehlers-Danlos syndrome, which was something I had never heard of before.

"As I looked into this more I found their checklist and I called my mum immediately as this described my whole life of symptoms and actually explained some of my medical history. I have had a life packed with sickness.

"From a child I had constant joint injuries including muscle tears and ligament damage, which were put down to me being flexible and very clumsy. I would trip over my own shadow, as my family would say.

"Then as I got older I started to have trouble staying focused and staying awake being a teenager this was put down to laziness and lack of motivation," Taylor added.

"I had some internal problems at 15 and then at 17 I had what we thought was a severe eczema breakout and spent a few years in full-body bandages from a skin infection, which caused my skin to rot so I had multiple hospital stays which caused my school work to suffer along with my confidence."

Taylor says her eventual diagnosis became her journey to a better life
Taylor says her eventual diagnosis became her journey to a better life -Credit:Submitted

Taylor says she later found herself struggling to keep her eyes open working as a supervisor in a coffee shop: "Everyone I knew lived on coffee and energy drinks so it felt normal. As my mental health deteriorated from outside factors, my bowels got worse and this was put down to stress and diet. I was feeling like I was causing this myself which led to more stress that was feeding the symptoms and sparking breakdowns."

When she finally got her diagnosis, Taylor says it became her journey to a better life: "I felt seen for the first time and had been validated that this was not all in my head and all the issues I had were not my fault but symptoms of this illness.

"Unfortunately due to my physical deterioration physically, I'm not as mobile as I once was even having to use mobility aids daily along with the chronic fatigue, I'm unfit for work now but I feel like I am in the best position mentally that I've ever been in. I still regularly attend the recovery college for classes to improve my mental health and look after myself better than before."

Meanwhile for Mandy, having Ehlers Danlos Syndrome means dealing with body-wide symptoms affecting all aspects of her life.

She said: "EDS UK is an incredible charity that provides advice, research and support to not just sufferers of EDS, but also friends and families too. Not only have I personally benefited from the charity’s research and support over the last 10 years, but I have also been able to get involved first-hand as an Area Coordinator volunteer since 2022 and as Lead Volunteer for Awareness and Engagement since May 2023.

"Nobody should be left to fight on their own. Every person with EDS should have access to the appropriate medical services and care. That's why we are here, that's what drives us to work every day."

Mandy was involved in organising the first Dazzle Walk event at Stormont recently to mark Ehlers-Danlos Syndrome awareness month in May. The group also has an online petition calling for properly commissioned services for the diagnosis and treatment of EDS and HSD in Northern Ireland.

"On the day we had 34 attendees including members who have hEDS, HSD or EDS and their families. I was overwhelmed by the numbers because we are presently a very small support group. Many of the attendees had travelled from across Northern Ireland to join us in support.

"The event and the following social event were an amazing opportunity for our members, their families and EDS/HSD Northern Ireland volunteers to meet each other, share experiences and gain advice. We hope by running these events that our members and their families will know they do not have to fight alone."

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