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Lara: living with Ehlers-Danlos Syndrome

Bowel & Cancer Research

At the age of 24 Lara Bloom was diagnosed with Ehlers-Danlos Syndrome.

For years before this, she suffered chronic pain and multiple broken bones. All the time she was told that she was a hypochondriac.

She looks a picture of health. Her elfin features perfectly framed by fashion spectacles and spikey hair.

But behind the delicate gaze and striking smile, Lara Bloom is made of steely stuff.

She lives with Ehlers-Danlos syndrome – a condition which affects both the joints and digestive system, resulting in chronic pain, frequent broken bones, and a host of eating problems.

Her symptoms began when she was 11 years old – but EDS is so unrecognised that she wasn’t diagnosed until she was 24.

“The symptoms started with joint problems. I had multiple wrist fractures. I spent a lot of my teenage years on crutches and with my wrists in plaster. My ankles and knees were in chronic pain,” said Lara.

"The number of times I had broken wrists goes into double figures - the ligaments and tendons were so lax."

“Finally my wrists were fused, which stopped the fracturing but didn’t stop the pain. My knees were hypermobile [very bendy]. The tendons kept tearing in my ankles.”

Frequent trips to hospital brought no long-term relief, and none of the many doctors who examined Lara noticed that her extra-flexible joints – telltale signs of EDS – might be of significance.

“It was put down to growing pains, hypochondria, not having a very high pain threshold. No one picked it up,” said Lara, now 34 and living in Hertfordshire.

“My parents were upset that it took so long to diagnose. They could see the pain I was in and knew it was real and that I wasn’t a hypochondriac.”

As well as joint problems, EDS can go hand in hand with gut disorders.

“I had constipation all the time and pains in my lower stomach. At the age of 15, they removed my appendix – but discovered it was normal. It wasn’t what I wanted to hear. I was in agony and no one could tell me why,” she said.

As she reached her 20s, there were bladder and gynaecological problems too – she has had five laparoscopies and was treated numerous times for endometriosis.

“I started to question myself. I thought I might be going mad – I must be imagining this pain – but it feels so real.”

She has lost count of the number of operations she has undergone. “When I was younger, the hospital staff used to joke that they were going to name a bed after me because I was such a frequent patient.

“I also had a dent in my chest (called pectus excavatum) which caused a lot of pain along with lung problems – I’ve had pneumonia seven times in three years.”

Lara was finally sent to a dietician to see if diet could help her pain and symptoms.

“She put all of my symptoms together for the first time and referred me to the geneticist Dr Ann Childs, at St George’s Hospital, Tooting, who diagnosed Ehlers-Danlos Syndrome.

“I still to this day have not thanked her for what she did.

My diagnosis brought a lot of relief. After 13 years of chronic pain, there was finally a reason and I knew I wasn’t going mad and I could live a long life.

Dr Childs also remarked on the physical features common to those with Marfonoid Habitus EDS: long flat feet (Lara is 5ft 6 ins tall and wears size 8 shoes), a dent in the chest, a high-arch palate and a long thin face.

Because of her condition, Lara has recently been taking part in groundbreaking studies, funded by Bowel & Cancer Research at the National Centre for Bowel Research and Surgical Innovation in London including Dr Aktar's PhD on the role Tenascin X in the gut.

Research scientists have for the first time studied the association between hypermobility and gastro-intestinal problems such as Irritable Bowel Syndrome and Crohn’s disease which cause huge pain but for which there is no cure. They hope that establishing connective tissue as ‘the missing link’ between the two conditions will enable quicker diagnosis and more holistic treatment for patients.

With her diagnosis, Lara's begun to take back control.

The EDS diagnosis was a major turning point, not just for the treatment of her condition, but for her psychological wellbeing.

“I started to take responsibility for my pain and my condition. There is no cure for EDS, but I knew it couldn’t kill me,” she said.

“People with EDS can live a long life – it’s just a hard life. Everyone deals with it in a different way. My way was to decide I wasn’t going to let it beat me.”

Lara’s greatest act of defiance was completing the London Marathon in 2011.

“I’d never been able to walk more than a mile because of pain and breathlessness.

“But I trained for eight months and had a fantastic medical team with me. I fractured my foot at mile 13, but I finished in 8 hours, 18 minutes.

"I went to A&E the next morning with my medal around my neck and stuck two fingers up to EDS."

“I didn’t want EDS to define who I am. I want to define who I am. My best friend – my best painkiller – is a strong mind.”

A former photographer, Lara now works for EDS UK as Development Manager, a post she took on in 2009 whilst studying for a second degree (in global politics and international relations).

“Some days are really hard and I can’t sit at my desk. But EDS is so unpredictable. You can feel really well one minute and the next you are in a hospital bed.”

Her sister Stacey, 30, has also been diagnosed with EDS. “It’s hard for my mum and dad,” she said.

Whilst there is no cure for EDS, there are ways of managing it.

“The best thing you can do is keep as active and as mobile as you can,” said Lara.

“That’s hard because there is never a moment when you are not in pain, so your whole body doesn’t want to move. But when you strengthen your muscles, they can do the job which your connective tissue isn’t doing. Pilates, yoga and physio all help.”

There are drugs for some symptoms – Lara takes 9 tablets per day.  There are also diets.

“The best is Fodmap diet – but basically it means not eating anything nice (no dairy, onions, garlic, gluten) so it’s hard to stick to it.

“It’s a very isolating condition. That’s why I’m so passionate about EDS UK.”

She is proud that the small charity she joined four years ago now has 1,300 members and 3,500 Facebook followers.

“I won’t let my condition become an affliction. I know what I want to do with the charity because I want to give our members what I was looking for when I was diagnosed.

“I don’t want another kid at the age of 15 to be lying in a hospital bed in chronic pain being told she’s a hypochondriac.

"I want to prevent over-diagnosis and put out a positive message that EDS doesn’t have to be a life sentence."

“If you say you have MS, everyone knows what that is. I want EDS to have the same recognition. I want to help people have as full a life as possible.

“I’d like my experience to help bring forward the patient’s voice.”


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