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‘Singing and music kept me going’

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For Juliette O’Hea, singing is all about harmony.

She loves joining voices with the fellow members of her barbershop choir to create a varied and beautiful sound.

And since childhood she has valued the sense of peace and harmony singing brings her in the face of pain and illness.

Juliette was just 10 when she began suffering with a form of arthritis.

Ankylosing spondylitis (AS) causes inflammation and bone growth, resulting in stiffness, pain and fatigue.

The symptoms would be alarming for anyone but for a little girl away from home at boarding school, they were devastating.

‘We didn’t know what it was so it was pretty scary,’ says Juliette, now a 48-year-old mum living in Rowlands Castle. ‘I was in a dorm full of girls and couldn’t sleep. I’d be awake at night crying because I couldn’t get comfortable.’

But one of the worst consequences was not being able to play games.

Juliette, who grew up in Chichester but went to school near Hastings, had always been sporty but suddenly felt she wasn’t part of the group. ‘It was the feeling of being different that was difficult to cope with. I felt like I’d been ostracised.’

But proving that there really can be a silver lining, it was the little girl’s condition that led to her life-long passion for music.

Instead of taking part in games, the youngster would head for the music room and learned to play the piano and viola.

And then she discovered singing. It was being part of the school choir, standing side by side with her fellow pupils in their blue Harris tweed uniforms, that gave her a sense of belonging and joy.

‘Most of the time I felt different and washed out. I think the only thing that really kept me going at that time was singing and music,’ she recalls.

Now Juliette is happily sharing her life with husband Nick and 10-year-old daughter Emma. But she still gets a similar boost from singing with Horndean-based Spinnaker Chorus, albeit wearing a different kind of uniform.

The choir split into sections to sing four-part harmony and often wear striking sparkling outfits when they’re taking part in competitions.

Juliette not only enjoys being with her tuneful companions and belting out uplifting songs, but also believes singing is good for her condition.

AS mainly affects the joints of the lower back. Inflammation occurs and scar tissue forms in the spaces between vertebrae (the chain of bones that make up the spine).

The tissue may then turn to bone and fill the spaces between vertebrae leading to very limited movement.

Juliette says: ‘There is a risk of fracture because the bony spurs can form bridges. You no longer have that mobility and sponginess to absorb shock.’

The condition can also affect the ribcage, making breathing painful.

Juliette believes that the choreographed movements of the choir improves her posture and helps to combat stiffness.

And she adds: ‘You exercise the ribcage and soften the shoulders, and it’s great for breathing.’

A trained physiotherapist with a masters degree in rheumatology, Juliette runs exercise groups for people with arthritis.

She says: ‘The exercises are specific for posture and strength. It keeps you straight so you have less risk of ending up in a stooped position and I believe if you stay mobile you can prevent these bony spurs joining, which creates the immobility.’

It was training as a physiotherapist at the age of 18 that led to Juliette’s diagnosis.

AS was rarely identified quickly back then and there are still problems with early diagnosis today.

Juliette says; ‘Unfortunately some people are putting up with it for years. There is no cure but the quicker you diagnose, the easier it is to alleviate symptoms.’

She was horrified when she discovered the source of her pain at 18.

‘I looked in this book and all I could focus on were these pictures of a stooped man. I was terrified.’

But the condition, which is genetic, affects people to varying degrees. Juliette’s twin brother Peter has it but his life is hardly affected at all.

She, on the other hand, has been through periods of suffering and anguish. Juliette learned to manage her condition with exercise and anti-inflammatories and moved to New Zealand where she enjoyed an active, outdoor life.

But at 27 she suffered a flare-up so bad that she had to return to her parents’ home and spend some time in a wheelchair.

AS has been linked to conditions of the gut and Juliette also has Crohn’s disease, which causes inflammation of the digestive system lining.

She believes a bout of food poisoning may have been linked to the worsening of her AS symptoms. ‘It was so depressing, I thought at 27 this is it. I’d just look at my food and not want to eat, ‘

But again, the setback led to Juliette finding a new path. She studied for her masters degree in rheumatology and found helping people with similar conditions rewarding. She says she has great empathy with the people who come to her exercise classes..

‘I think it’s really helpful for people to get out and socialise and talk to others who really understand.

‘And I can give advice as well as take them through the exercises. It’s great for me too because I feel I’m doing something really positive.’

Juliette was determined to get on with her life, even after giving birth to Emma and suffering another setback while trying to care for a young child. She now worries about whether her daughter has inherited the condition.

But she is managing her AS with a mixture of medication, exercise and that all-important singing and says she has never felt so good.

 

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