Ehlers-Danlos syndrome can’t curb St John Ambulance volunteer’s will to help others
- Credit: Archant
To all appearances, Jade Cooper is a healthy young woman with a desire to help other people – but outward impressions belie a condition that can make a painful struggle of getting dressed in the morning.
Despite living with an invisible a syndrome that causes repetitive joint dislocation, the 21-year-old spends much of her time at the disposal of those in need.
Jade was diagnosed with Ehlers-Danlos syndrome (EDS) three years after becoming a St John Ambulance volunteer at 13. She started as a cadet in her hometown of Saxmundham – passing 15 of the 16 subjects needed for the Grand Prior Award – the highest achievable qualification.
Now based at Manningtree, Jade has a dual role as an advanced first aider and communications officer.
“I have Ehlers-Danlos syndrome – commonly described as an invisible illness – one that you would not know I had if you met me.
“A lot of the time it causes no major problems but there are some days when I have a flare-up, and even dressing and putting on socks can be difficult.
“My roles mean that I can be an active first aider at events, with very few restrictions on my movement and what I can do. But when EDS makes its presence known, I can then switch to being a comms officer, coordinating teams of first-aiders from one of our mobile control centres at larger events.”
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EDS sufferers are sometimes referred to as medical zebras – based on the medical proverb, “When you hear hoofbeats, think of horses, not zebras” – meaning doctors should look for the expected cause before considering the unusual.
The syndrome, which is commonly misdiagnosed as hypermobility, affects the collagen in Jade’s joints, making them extremely flexible and prone to dislocation. Most of the time, Jade can manage dislocations by popping joints back into place.
Since being diagnosed after visiting hospital with wrist pains, she has attended a rehabilitation programme and learned various coping techniques for day-to-day life.
“I assess how I am doing before volunteering for an event and make sure I am fit for the role,” she said.
“I also pace myself, which is all part of self-management. If I’m not fit enough to help people with my first aid skills, I have a purpose-built, ultra-lightweight wheelchair which I can use in the control centre and spend my time communicating with and assisting the first-aiders on site.”
Jade has been told that she must not work for more than 16 hours a week. She wanted to be a midwife but was unable to get into college due to her EDS. When not volunteering, she works as a baby-sitter.
This week is Volunteers’ Week – an annual celebration of the contribution made by millions of volunteers across the UK. Jade is grateful of the skills she has learned as a volunteer. She said: “For the future, I know that the radio communications work I have been doing for St John Ambulance could be very useful job-wise, and hopefully I will find something in that area.”