Radio 3 presenter Hannah French tripped and fell so many times in her early 20s that she lost count of the injuries she suffered.
“I’d be walking down the street and my knee would suddenly give out, or I’d fall down the stairs for no apparent reason,” says Hannah, 45, who lives in Noord. London with husband Paul, a communications director, and their daughter, 11.
Her body became covered in scars as a result, “but why it happened was always a bit mysterious,” she says.
Even a minimal impact can lead to injury – once the force of a sneeze caused her jaw to dislocate.
“I often ended up in the emergency room because my shoulder dislocated while reaching into the back of my car, or my knee went crooked while walking down the road,” says Hannah.
Doctors were convinced the problem was related to her left knee, which had begun to point inward. At age 28, she had surgery to straighten it by cutting the iliotibial band, the fibrous tissue that runs from the hip to the shin bone.
It didn’t help, because the problem wasn’t actually specific to her knee. It was in fact a form of Ehlers-Danlos syndrome (EDS) – an umbrella term for a group of thirteen conditions in which collagen, which forms the connective tissue that holds much of the body together, is weaker than normal.
Hannah was diagnosed by a rheumatologist, who only had to witness her range of motion 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 percent of EDS cases, with symptoms including excessively flexible joints because the ligaments that are supposed to hold them in place do not do so properly.
Those affected “regularly suffer injuries such as twisted ankles or dislocated shoulders,” says Dr Benjamin Ellis, consultant rheumatologist at Imperial College Healthcare NHS Trust in London.
Chronic pain and fatigue are also common – often not due to injury, says Dr. Ellis, but because the central nervous system becomes 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 aching pain that radiated from her knees and hips and was unaffected by painkillers. Desperate, she applied packets of frozen peas to her joints.
But when she started falling almost every time she left the house, she decided to use a wheelchair. She was only 28.
“It seemed like the safer option,” she says. ‘It’s scary to keep falling. I was afraid I was really going to harm myself.”
Hannah’s experience is all too common.
Amazingly, people with hypermobile EDS wait an average of 21 years for a diagnosis, according to new research published in the journal Disability and Rehabilitation and based on surveys of 2,000 people.
About 80 percent of those affected are women and many were labeled as ‘anxious and hysterical’ before their diagnosis, says Kathryn Berg, research manager at the University of Edinburgh’s Institute of Genetics and Cancer, who co-led the study. “Some were told by doctors that they were simply anxious, stressed or even that they were hypochondriacs.”
Some, like Hannah, used a wheelchair to prevent further injury but still waited years for a diagnosis, the team found.
Up to 300,000 people in Britain have EDS – although this could be ‘the tip of the iceberg’, according to a 2024 House of Commons debate, because the condition is so often misdiagnosed or overlooked.
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 delicate blood vessels can develop swellings or aneurysms that can be life-threatening).
And since connective tissue is found all over the body, hypermobile EDS can cause numerous – seemingly unrelated – symptoms.
The skin may be fragile and the tissues that form the intestinal wall may be looser than normal. This can cause constipation because waste is not properly propelled through the intestines.
“But others may have IBS,” says Dr. Ellis. ‘It’s very variable.’
Hannah had a combination of intestinal complaints.
Other signs include bladder problems or postural orthostatic tachycardia syndrome (PoTS) – where the heart beats faster and you feel dizzy when you stand up because the connective tissue in the blood vessels is loose and does not contract to stop blood pooling.
‘As a result, not enough blood reaches the brain temporarily and you feel faint,’ says Dr Ellis.
The diagnosis of hypermobile EDS is based on signs of hypermobility, such as the ability to bend the thumb back toward the forearm, widespread chronic pain, and very stretchy skin. Doctors can see if they can pinch the skin of the back of the hand further than 1.5 cm.
Yet this is not easy if someone is older, for example. And awareness is low, even among healthcare professionals.
“As we’ve found, some medical students get an hour on this topic and some get none at all,” Kathryn Berg added.
If hypermobile EDS is caught early, physical therapy can help keep joints stable and relieve bladder problems.
Stomach problems can sometimes be tackled through dietary changes, says Dr Ellis – but he adds: ‘The longer the person goes without support, the harder it can be to improve symptoms.’
The diagnosis of hypermobile EDS is based on signs of hypermobility, such as the ability to bend the thumb back toward the forearm (pictured), widespread chronic pain, and very stretchy skin
In addition to the numerous dislocations, irritable bowel syndrome (IBS) and pain, mild exertion can require Hannah to rest for days
By the time Hannah was diagnosed in 2010, there was so much “wrong” with her that she hesitated to tell her rheumatologist about all her symptoms, she says. “There are so many aspects of your health that affect you that you wonder if you’re a hypochondriac.”
In addition to the numerous dislocations, IBS and pain, mild exertion can require her to rest for days.
Even the way her teeth sat in her mouth was due to EDS (the defective collagen can affect the shape of the jaw, leaving it unusually high and thin).
That was also why local anesthetics rarely worked at the dentist (the loose tissue allows the medicine to spread quickly instead of blocking the pain). “But I started to feel like I was just making a fuss,” says Hannah.
Although hypermobile EDS is not linked to a single gene, it often runs in families. Hannah realized that many relatives on her mother’s side “had been living with what we thought was just mysterious chronic pain – but I now know it was EDS.”
She recalls, “My great-grandmother regularly had to go to bed in pain and exhaustion, and people thought she was just a hypochondriac.”
Hannah’s diagnosis didn’t bring a miracle cure, but she has learned to adapt. However, she had to give up her career as a flutist. “Holding the flute was physically exhausting,” she says. ‘Also, my wheelchair once got stuck in a field after a concert, so I thought, “Enough.”’ She can take a few steps independently, but hangs on to the wheelchair ‘because otherwise I would fall over’.
She made it through the pregnancy surprisingly well – “my body finally stretched,” she says – but the delivery was a carefully performed C-section. There was no natural birth.
The pain she has been experiencing continuously for twenty years is one of the most difficult elements to bear.
She was sent to a pain clinic in 2013, where she learned coping strategies, such as “instead of thinking, ‘I’m in so much pain all over.’ I pull back and think, ‘No, your hand doesn’t hurt and your shoulder doesn’t hurt,’ and it’s not that overwhelming,” she explains.
Yet Hannah takes ‘piles’ of paracetamol, ibuprofen and codeine every day – and keeps Oramorph [liquid morphine] on top of the bathroom cabinet. “I know it’s there, but I don’t go there easily,” she says.
She also has to remember to pace herself.
‘I recently presented the Proms for Radio 3 two evenings in a row – and then I had to plan a day in bed,’ she says.
“My only wish is that I had been kinder to my younger self, instead of enduring my pain and fatigue.”
She knows there is a good chance her daughter will have inherited the condition.
“But we now know what we’re looking for and if we can discover it early for her – and others – it could make all the difference.”
