Joint hypermobility syndrome case study
Reproduced from Issue 123 of Arthritis Today
Catherine Brown and son Nicholas
Catherine Brown's feet were in a terrible state because of her condition which went undiagnosed for 30 years. Jane Tadman reports.
When the podiatrist saw Catherine Brown's feet for the very first time she burst out: "Oh my God."
Catherine, aged 40, has had severe joint hypermobility syndrome since childhood, but until a year ago was undiagnosed.
"My feet were all over the place, and my feet and toes all in the wrong position," explained Catherine. "Everything was out of line so I wasn't balancing very well, and my toes were all floppy. I couldn't walk or stand for long, and I had to sit with my feet up and kick my shoes off quickly because they were so sore, tender and achey."
Foot disorders are a major potential problem in people with joint hypermobility, and Catherine has an extreme case. Unfortunately, her condition was not picked up by the medical profession for more than 30 years; dismissed as "growing pains" by doctors throughout her childhood.
As a result she had picked up all kinds of bad habits, and it's only now, under the expert eye of leading hypermobility expert, consultant rheumatologist Professor Howard Bird at Chapel Allerton Hospital in Leeds, and his team, is she getting the care and treatment she has needed for so long.
"Because my feet were in such a state I walked in a certain way and put pressure on other joints as a way of compensating," says Catherine, who lives with her family in Blackpool. Insoles, also known as orthoses, have made a big difference. "I now have moulded insoles with a little bit of a heel in my shoes, and they have helped a lot because they stabilise my feet more. They also help my balance, and take a lot of pressure off my knees. After all, everything you do is connected to your feet!"
Both Catherine's sons Craig, who is 16, and 13-year-old Nicholas, have also been found to have hypermobility. Nicholas is recovering from an operation on his knee, and both also wear special insoles to correct foot deformity and help their balance.
They at least have some knowledge about their condition, and have been given exercises and physiotherapy essential for keeping their joints and strong as possible, to keep them in place and stop them slipping out of place.
For Catherine, that knowledge has come almost too late. "I was told I was a hypochondriac for years, but I had such pain in all my joints every day. I remember when I was very, very young crying in absolute agony, and no-one knew what was happening. I had eight operations on my knees, but nothing worked." Her experience has also made her wary of doctors. "It took me a long time to trust doctors again, because they fobbed me off for so long," she says.
She managed to keep working over the years – she is a special needs nursery nurse in a local school – but was in constant pain. Whenever she walked or got up from a chair she had to concentrate about every movement because she could feel her joints starting to slip. The pain was appalling.
Catherine was eventually diagnosed by a rheumatologist at a Blackpool hospital, but even then it wasn't the end of the line. He told her she had a classic case of joint hypermobility syndrome – but added that there was nothing that could be done.
Catherine was determined to find out more information about this baffling condition by trawling the Internet, which is how she tracked down Howard Bird. She insisted her GP refer her to see him. "It was absolutely wonderful. The first time I went to see him he said: 'Just talk,' and I did for an hour and 45 minutes. I could have cried with relief."
Prof Bird and his team have now given Catherine all the information she needed to know about hypermobility syndrome 30 years ago. As well as the insoles, she is now on strong medication and an exercise and physiotherapy programme. She has splints for her hands and tubigrips for her knees.
She regularly visits Leeds to see the podiatry and physiotherapy teams. And there is always someone available at the end of a phone when it all gets too much.
Even now there are problems. Her knees regularly collapse from beneath her. She has to wear very tight jeans to stop her hips from slipping out of joint. Because she can't manage stairs the family have had to move to a specially adapted bungalow. And there is the frustration of looking perfectly healthy when she's anything but – which has led to threats from mainly elderly people who see her park, perfectly legally, in a disabled parking space!
But although Catherine is still in a lot of pain, it's eased somewhat by finally knowing what is wrong with her, and that she is in good hands. And the knowledge that her sons won't be labelled hypochondriacs for the next 20 years, as she was.
- arc is currently funding two clinical trials at the University of Leeds to test the effectiveness of foot orthoses in patients with joint hypermobility and rheumatoid arthritis.
