Teaching assistant in pain every day of her life finally diagnosed after birth of second child

Lauren Greenheld has been in pain every day of her life.

After the birth of her second child, she was bed-bound for six months in agonising discomfort and fatigue. But it wasn’t until two years later, when she was 26, that Lauren was finally diagnosed with a little-known tissue disorder called Ehlers-Danlos syndromes, which affects every part of her body.

“I felt relieved when I got the diagnosis. Finally, there was somebody who didn’t think I was making everything up,” says Lauren, a teaching assistant from Teesside. But I also felt like I didn’t have any closure because it’s a lifelong condition which you need to learn how to manage. There’s no real treatment and no cure.”

Ehlers-Danlos syndromes, or EDS, are often inherited and are caused by genetic changes that affect connective tissue. There are 13 types, and Lauren has the most common, hypermobile EDS, that affects around 1 in 5,000 people.

It means her jaw can suddenly partially dislocate, she frequently tears ligaments, her skin is stretchy and easily bruised, her eyelids swell, her joints can become inflamed, and she suffers blinding headaches and chronic fatigue.

“Each symptom wouldn’t be a big deal. But when you combine them with all the others, it can be debilitating,” says Lauren, 36, who also has fibromyalgia.

Various celebrities have revealed their struggles with EDS, including actor and presenter Jameela Jamil, Coronation Street star Cherylee Houston, US actor Selma Blair, and writer-director Lena Dunham. But there is still very little awareness or understanding out there – as Lauren has found to her cost.

“It’s really, really lonely, the loneliest of conditions,” she says. “You go to all these specialists and they don’t have a clue what is going on. Even the people closest to you don’t realise how you feel. Relationships break down. My partner at the time didn’t believe me – he thought I was just lazy.”

Lauren now lives with her mum and her two daughters, aged 14 and 12, but says: “Even in a house of four, you can still feel like you’re on your own. Unless you’re suffering, you don’t realise how painful it can be.

“It’s heart-breaking, especially when your children are little and they want to play, and you can’t get out of bed or off the settee because you’re in agony.”

What finally helped Lauren is exercise. After her six months confined to bed, she was sent to a physiotherapist who got her using dumbbells and it brought instant pain relief in her elbows. Even though she can no longer lift weights – she has degenerative arthritis in her lower back – she goes to the gym at least three times a week.

She takes care to eat healthy food, gets lots of sleep, avoids contact sports, and takes medication including an anti-depressant which also helps with her fibromyalgia. Lauren works at the Mackenzie Thorpe Centre in South Bank, a specialist school run by the North East Autism Society.

Research points to a link between autism and EDS. People with hypermobile EDS have a higher likelihood of being autistic – and having an autistic child – than the general population. Indeed, both of Lauren’s daughters are autistic, and she herself is looking into getting an autism diagnosis.

May is EDS Awareness Month, and Lauren is passionate about spreading awareness of potential EDS symptoms to parents and teachers, especially if they’re dealing with autistic children who may not recognise or be able to communicate the pain that they’re in.

“When I was growing up, doctors shrugged off my symptoms as growing pains. After I was bedbound, it took me and my doctor more than two years to reach the diagnosis,” Lauren says.

“Now I look out for the symptoms wherever I go. My youngest daughter was diagnosed with EDS when she was five because the signs were always there.

“I want parents and teachers to be able to spot signs like being super flexible, struggling with pain in the back or joints, headaches, dental overcrowding, jaw aches, fatigue, slow-healing skin or unexplained bruising. They should keep a diary of symptoms and take them to the GP.”

Despite the campaigns to raise awareness and promote research, there is still little in the way of support for EDS sufferers. “I wish there were more services, but nothing much you can do beyond knowing your own body and accepting it,” says Lauren.

“I was quite angry at first – I just wanted an answer and a resolution. Once I accepted it, it was a lot easier. Then I felt really proud of myself – even just going to work, I’m really proud of that.”

For further information and support, see Ehlers-Danlos Support UK at www.ehlers-danlos.org.

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