Radio 3 presenter Hannah French tripped and fell so often during her early 20s that she lost count of the injuries she sustained.
‘I would be walking down the street and my knee would suddenly give way, or I would tumble down the stairs for no apparent reason,’ says Hannah, 45, who lives in north London with husband Paul, a communications director, and their daughter, 11.
Her body became riddled with scars as a result, ‘but why it was happening was always a bit mysterious’, she says.
Even minimal impact could lead to injury – once the force of a sneeze resulted in her dislocating her jaw.
‘I’d often end up in A&E because my shoulder dislocated as I reached into the back of my car, or my knee had come out of place walking down the road,’ says Hannah.
Doctors were convinced her problem was isolated to her left knee, which was starting to face inwards. Aged 28, she had surgery to straighten it by cutting the iliotibial band, the fibrous tissue that runs from the hip to the shin.
It did nothing to help – because the problem wasn’t actually specific to her knee. It was, in fact, a form of Ehlers-Danlos syndromes (EDS) – an umbrella term for a group of 13 conditions where collagen that forms the connective tissue holding much of the body together is weaker than normal.
Hannah was diagnosed by a rheumatologist, who had only to witness her range of movements and hear her medical history to identify the condition.
Radio 3 presenter Hannah French has hypermobile Ehlers-Danlos Syndrome (EDS). She uses a wheelchair to avoid injury
The type she has is hypermobile EDS, which accounts for 90 per cent of EDS cases, with symptoms such as excessively flexible joints as ligaments that should hold them in place fail to do so properly.
Those affected ‘may regularly pick up injuries such as twisted ankles or dislocated shoulders’, says Dr Benjamin Ellis, a consultant rheumatologist at Imperial College Healthcare NHS Trust in London.
Chronic pain and fatigue are also common – often not due to injuries, says Dr Ellis, but because the central nervous system is confused by the unpredictable way the body behaves and creates relentless pain and fatigue to slow it down.
A year before her diagnosis, Hannah had agonising pain radiating from her knees and hips that painkillers did not touch. In desperation, she applied packs of frozen peas to her joints.
But when she started falling virtually every time she left the house, she took the decision to use a wheelchair. She was just 28.
‘It seemed the safer option,’ she says. ‘It’s frightening to keep falling – I was scared I would do real harm to myself.’
Hannah’s experience is all too common.
Astonishingly, people with hypermobile EDS wait on average 21 years for a diagnosis, according to new research published in the journal Disability and Rehabilitation and based on surveys with 2,000 people.
Around 80 per cent of those affected are women and many were labelled as ‘anxious and hysterical’ before their diagnosis, says Kathryn Berg, research manager at the Institute of Genetics and Cancer at the University of Edinburgh, who co-led the study. ‘Some were told by doctors they were just anxious, stressed or even that they were hypochondriacs.’
Some, like Hannah, used wheelchairs to avoid further injury – but still spent years waiting for a diagnosis, the team discovered.
Up to 300,000 people in the UK have EDS – although this may be ‘the tip of the iceberg’, according to a 2024 House of Commons debate, as the condition is so often misdiagnosed or missed.
This is especially true for hypermobile EDS, for which there is no genetic test – unlike some of the rarer forms, such as vascular EDS (where fragile blood vessels can develop swellings or aneurysms that can be life-threatening).
And as connective tissue is found all over the body, hypermobile EDS may cause numerous – seemingly unrelated – symptoms.
The skin may be fragile and tissues that form the lining of the gut may be more lax than normal. This can cause constipation, as waste is not propelled along the gut properly.
‘But others may have IBS,’ says Dr Ellis. ‘It is very variable.’
Hannah had this mixture of gut symptoms.
Other signs include bladder problems, or postural orthostatic tachycardia syndrome (PoTS) – where the heart races and they get dizzy standing up because the connective tissue in the blood vessels is loose and they don’t constrict to stop blood pooling.
‘As a result, not enough blood reaches the brain temporarily and you feel faint,’ says Dr Ellis.
Diagnosis of hypermobile EDS is based on signs of hypermobility, such as being able to bend the thumb back to the forearm, widespread chronic pain, and highly stretchy skin. Doctors may see if they can pinch skin from the back of the hand beyond 1.5cm.
Yet this isn’t straightforward if someone is older, for example. And awareness is low, even among healthcare professionals.
‘From what we’ve determined, some medical students get an hour on this subject and some none at all,’ adds Kathryn Berg.
If hypermobile EDS is caught early, physiotherapy can help to keep joints stable, and ease bladder problems.
Gastric problems can sometimes be addressed through dietary changes, says Dr Ellis – but he adds: ‘The longer the person goes unsupported, the harder it can be to improve symptoms’.
Diagnosis of hypermobile EDS is based on signs of hypermobility, such as being able to bend the thumb back to the forearm (pictured), widespread chronic pain and highly stretchy skin
As well as the numerous dislocations, Irritable bowel syndrome (IBS) and pain, mild exertion could leave Hannah needing to rest for days
By the time Hannah was diagnosed in 2010 there was so much ‘wrong’ with her that she hesitated to tell the rheumatologist all her symptoms, she says. ‘There are so many elements of your health that are affected you question if you’re a hypochondriac.’
As well as the numerous dislocations, IBS and pain, mild exertion could leave her needing to rest for days.
Even the way her teeth were crowded into her mouth was due to EDS (the faulty collagen can affect the jaw shape, leaving it unusually high and thin).
It was also why local anaesthetic rarely worked at the dentist (the loose tissue means the drug disperses quickly rather than blocking pain). ‘But I was made to feel I was just making a fuss,’ says Hannah.
While not linked to a single gene, hypermobile EDS often runs in families. Hannah realised many relatives on her mum’s side ‘had lived with what we thought was just mysterious chronic pain – but I now know was EDS’.
She recalls: ‘My great grandmother used to regularly have to take to her bed with pain and exhaustion – and people thought she was just a hypochondriac.’
Hannah’s diagnosis brought no miracle cure, but she has learned to adapt. However she had to give up her career as a flautist. ‘Holding the flute was physically exhausting,’ she says. ‘Plus, my wheelchair once became stuck in a field following a concert, and so I thought, “Enough”.’ She can take a few steps unaided but sticks to the wheelchair ‘because otherwise I fall over’.
She coped with pregnancy surprisingly well – ‘finally my body stretched into itself’, she says – but the birth was a carefully managed caesarean. A natural birth was out of the question.
The pain she has been in constantly for 20 years has been one of the hardest elements to bear.
She was sent to a pain clinic in 2013, where she was taught coping strategies, such as ‘rather than thinking, “I hurt so much all over” I pull back and think, “No, your hand doesn’t hurt or your shoulder doesn’t hurt,” – and it isn’t quite so overwhelming’, she explains.
Even so, Hannah takes ‘stacks’ of paracetamol as well as ibuprofen and codeine daily – and keeps Oramorph [liquid morphine] on top of the bathroom cabinet. ‘I know it’s there but don’t go to it easily,’ she says.
She also has to remember to pace herself.
‘Recently I presented the Proms for Radio 3 for two nights in a row – and after that I had to allow for a day in bed,’ she says.
‘My one wish is that I had been kinder to my younger self, rather than pushing through my pain and fatigue.’
She knows there is a high chance her daughter will have inherited the condition.
‘But we know what we are looking for now and if we can catch it early for her – and others – that could make all the difference.’
