The Jewish Chronicle - Jessica Weinstein
Lara Bloom talks about living with Ehlers-Danlos Syndrome, a multi-systemic connective tissue condition that is difficult to diagnose
"It's like being chased constantly," Lara Bloom tells me as we sit in Starbucks sipping our drinks. This rather ominous confession may suggest that the interview is going to be about witness protection, or maybe training for an Iron Man triathlon. But Bloom is talking about something rather more pervasive.
She has Ehlers-Danlos Syndrome or EDS, a multi-systemic connective tissue condition that has a number of different types. One of the most common is the hypermobile form. Current statistics indicate that one person in 5,000 suffers from hypermobile EDS, but Bloom says that, anecdotally, the figure is thought to be closer to one in 1,000.
She is quick to point out that there's more to hypermobility than "just being a bit bendy". The logo of the Ehlers-Danlos Society is a zebra. This, Bloom explains, is because they are constantly striving to get "doctors to think outside the box", referring to the old adage, "when you hear the sound of hooves, think horses, not zebras". People with EDS are zebras, she says. No two zebras have the same stripes, just like no two EDS suffers will present with exactly the same symptoms.
EDS is caused by a mutation in a person's collagen so, "by its nature, it affects pretty much every part of the body; there's not really anywhere that escapes the symptoms." Some people experience joint pain, "a bit of fatigue, a bit of IBS [irritable bowel syndrome] but they never put that symptom-list together and they'll go on because none of it is too bad." This group may never be diagnosed, making research into EDS even more difficult.
Other people become aware of a problem when something happens that triggers their body into becoming particularly symptomatic, such as a car accident or an illness.
"They will then seek out a doctor and then maybe they might connect the fact that their joints have dislocated in the past or they've got osteopenia [a less severe form of osteoporosis] or a host of other things."
The main problem, says Bloom, is that not enough doctors know about these links, so they don't recognise EDS. "They're being told they're hypochondriacs, they've got chronic fatigue syndrome, they've got IBS and not being given the correct diagnosis."
This means many people suffer more than necessary. "If we got more early diagnoses, got them into the correct physio, the right diet, their quality of life would be much better. Instead they're getting into this cycle of deterioration and their body is shutting down, so there are people ending up in wheelchairs and bed-bound that don't need to be."
This situation leads to a high rate of depression among EDS sufferers, not least because friends and family find it difficult to understand why they are so floored by something that doctors often write off. "You can be fine one day and the next day you can't get out of bed. So people succumb to being ill because it's easier for others to understand."
As co-executive director of the international charity the Ehlers-Danlos Society, Bloom is understandably passionate about EDS education and keen to raise awareness.
In 2011, she walked the London Marathon in an attempt to become the first person with EDS to complete it. It took her eight hours and 18 minutes and she fractured her foot on the 13th mile - but kept going for the remaining 13 miles on what she describes as "the best day of my life." She raised £10,500 and the footage of her crossing the finishing line gained something of a cult following within the EDS community. However, it wasn't enough for Bloom, who would like people to recognise the term EDS in the way we recognise cancer research.
Now 36, Bloom was diagnosed with EDS at the age of 24. Her symptoms change from day to day, but never go away.
"I have problems with my neck; I have something called a pectus excavatum, my chest goes in and restricts my capacity so I suffer with a lot of pneumonias and chest infections; I have two prolapsing heart valves and I have arrhythmias; my liver sits in my pelvis because it's so lax; it affects my bowel and bladder; I've had my elbow operated on, both my wrists fused, had both my knees operated on three times, had my right ankle operated on three times, and I've got TMJ [problems with joints in the jaw]."
If this all sounds grim, Bloom presents quite a contrasting picture.
"I like to [fight a] battle every day with EDS," she says, "where I win and I don't look too sick." And she doesn't look sick to me, despite admitting she's experiencing a lot of jaw pain. She's bubbly, laughs a lot during our interview and is excited to tell me about her recent personal triumph. She proposed to her girlfriend just days before our meeting - in Paris, using an engraved telescope so that when her girlfriend looked into the sky, 'Will you marry me?' was written on the moon.
Maybe it was this resilience, this positivity in the face of pain and a life-limiting condition for which there is no cure, that resulted in Bloom's recent nomination for Woman of the Year. The awards ceremony is next week at the InterContinental Hotel, Park Lane in London and Bloom tells me, slightly incredulously, that in fact she is not only a nominee, but a winner. The promotional material says that "each guest is regarded as a 'Woman of the Year' and represents not only herself, but the millions of women who make a difference every day."
Bloom doesn't know who nominated her but is "totally blown away. It's extremely flattering and exciting on a personal level." It also gives her the perfect opportunity to raise awareness of EDS, something she's been trying to do since she first received her diagnosis.
Being able to put a name to her symptoms caused her not only to become interested in EDS but to become its champion.
In 2009, she was working as a photographer for Getty Images when she started suffering from bad dizzy spells and fatigue and found herself passing out. This was due to postural tachycardia syndrome or PoTS, which caused her heart rate to rise while her blood pressure dropped. Struggling to work, Bloom decided to go to an American EDS conference because "I had never met anyone else with EDS and it was time for me to find out more about this condition."
This event really changed her life. "I was surrounded by all these people and this incredible organisation," she says, "and I was, like, why isn't this in the UK?"
There was in fact "a very small support group" offering services to people with EDS called the Ehlers-Danlos Support Group.
Run by volunteers, the group was unable "to be very proactive" so Bloom decided to run a fundraising event for them. Coincidentally, shortly after this decision, Bloom was at a Getty Images event where she was introduced to man whose daughter had died from a vascular form of EDS aged 19. "The colour drained from his face and he said: 'You're one of the only people I've ever met with it'," she recalls.
Like Bloom, he had been trying to support the Ehlers-Danlos Support Group but didn't feel they were set up to deal with a large financial contribution. The rest of the story goes something like this: he asked Bloom to write up a list of everything she would want from a charity -this included changing the name to EDS UK, setting up a website, running conferences, printing hoodies - and then turned to her and said: "I've decided how I'm going to spend my money. I'm going to pay your salary for two years and you're going to do everything you've said on that piece of paper".
Bloom ended up running EDS UK for five years, from 2010-2015 ("working about 150,000 hours a week") and growing it from a one-woman enterprise at her home to eight members of staff and one of the most successful EDS charities in the world, before joining forces with a team in America to set up the international Ehlers-Danlos Society.
This wasn't Bloom's first foray into building a charity. In 2007, she joined a social-action trip to South Africa run by Aish, the Jewish educational organisation, and helped set up a charity for Aids orphans called ASAP (African Social Action Project).
Enthusiastic about her work with Aish, Bloom, who grew up in Bushey, says that, while she doesn't necessarily "fit" the Jewish community (describing herself as "a tattooed lesbian") she has always been welcomed. And she believes that EDS is something which deserves attention from the Jewish community.
There is a genetic component to EDS, although as with most aspects of the disease, there has not been enough research into this to come to any helpful conclusions. Bloom's sister also has it - she nearly died a few years ago due to a bowel blockage - and Bloom says that, anecdotally, she has heard of "lots of Jews who have it."
She was recently approached by a Jewish charity looking for studies into EDS prevalence in the Jewish community, but, while this is something Bloom hopes will be looked into soon, she says regretfully that "on the long list of studies that need to be done, it's kind of at the end of it, because it would be interesting but not life-changing."
She does have some potentially life-changing advice for anyone suffering from EDS, though - a simple plea to "please live as many good days as you can."
Advice that is probably applicable to all of us.