Phoebe's story - joint hypermobility

There’s more to joint hypermobility than just being double-jointed and super-bendy. It can devastate young lives, as Phoebe explains.

For most of her young life, 18-year-old Phoebe Kemp has lived with severe pain. At the age of eight her knees suddenly began to lock for no apparent reason and by the time she was at secondary school she spent much of her time in a wheelchair or on crutches, her knees unable to bear her weight.

In her early teens, Phoebe suffered a series of bad flares which left her in agony and completely unable to walk for two months.

Medics struggled to diagnose her condition but eventually doctors at the Royal National Hospital for Rheumatic Diseases (RNHRD) in Bath, decided that her symptoms were due to joint hypermobility.

By this time Phoebe’s hands were also affected and she was finding it increasingly difficult to write for long periods.

Two factors helped Phoebe set her life back on course. The first was drama. She explains: “I used to do a lot of dancing but I had to stop because of the pain and because at the time they thought it would damage my knees. And when I stopped my mum enrolled me in a drama group instead.”

The teenager is now taking three A-levels – including drama – and currently auditioning for drama schools in Bristol and London.

The second was attending the three-week adolescent pain management programme, part of the Bath Pain Management Unit at the RNHRD.

The programme was set up in 1998 to take national referrals and is aimed at teenagers whose lives have been disrupted by pain to the extent that they can no longer attend school or college.

The multi-disciplinary rehabilitation course treats around 120 youngsters a year, helping them to become less dependent on hospital services and works with them to get back to a more normal lifestyle – despite the pain – through graded exercise, relaxation, goal setting and planning and pacing activities.

After the three weeks teenagers go back home and are treated locally, but are followed up by the Min for the next two years. More than 60 per cent are able to go back into full-time education or employment.

For Phoebe the programme was something of a turning point. “I’d not be able to do what I’m doing now if I hadn’t been on the course,” she says. “I used to take tramadol for the pain which made me feel all woozy, but now I just take paracetamol and ibuprofen when absolutely necessary. I can manage and live with the pain more effectively since going on the programme. It was so useful.”

Phoebe has been told that if she gets herself very physically fit now that she has stopped growing she has a good chance that her condition will lessen in adult life. She is now looking forward to a career as an actress. She knows it will be tough; her mobility remains severely restricted, she can’t walk for more than 15 minutes and has to have constant rest breaks during exams because of her painful wrists, but she is determined.

“I want to do it too much not to do it,” she says simply.

Phoebe’s story first appeared in Arthritis Today in 2008.