Friday 23 March 2018

Smiling through the pain

Clare O'Kennedy has endured bouts of seriously debilitating pain for years. She tells our reporter how she employs various tactics to lessen the severity of her rare condition and how, as a consequence, she now leads a very active life

Rare condition: Clare O'Kennedy. Photo: Steve Humphries
Rare condition: Clare O'Kennedy. Photo: Steve Humphries

Joy Orpen

Clare O'Kennedy (29) is a determined, vivacious Wicklow native. She's well on her way to becoming a specialist nurse, providing palliative care for children with complex needs. It's an unselfish and challenging career path to choose.

Given her own personal experiences, she cannot but have a deep understanding of what these special children are going through. Over the years, Clare has had to deal with shoulders that can slip out of their sockets many times a day, causing extreme pain. It can also happen to her hips, and all because she has a rare, inherited condition that most people have never even heard of.

After school, Clare trained to become an intellectual-disability nurse; this was followed by a qualification in paediatric nursing, and, in time, she will become a palliative children's nurse. Five years ago, she married Stuart O'Kennedy, her childhood sweetheart. They met as pupils at Wesley College, in Dublin. They began dating when they were 16, and married when they were 25. At the time, both were fully aware that Clare was living with Holt-Oram Syndrome (HOS), a disease that affects the bones of the upper limbs, and can cause serious heart problems.

"It's a very rare genetic orthopaedic and cardiac condition," she explains. "My bones, especially those in my arms, are underdeveloped." HOS is caused by a mutation in the gene that plays an important role in the prenatal development of the arms and heart. While it is suggested that HOS affects one in 100,000 live births, Clare only knows of nine other cases in Ireland.

When she was three years old, Clare had open-heart surgery. And after that, she had a fairly normal childhood. But when she was 10, she fell and suffered a fracture dislocation of her shoulder. And so began a long-term battle to keep her skeletal frame functioning to its best possible capacity, despite difficult odds.

"Because of the severity of my particular condition, it is now hitting me hard," she says. Over the years, she has had to endure many dislocations of her shoulders. These excruciating incidents have happened on occasion as often as 12 times a day. "Sometimes it would reduce [remedy] itself," she explains. "Other times, I'd have to go to A&E."

Four years ago, Clare's left shoulder was dislocating so frequently, it had to be replaced with a titanium one. "Now my right shoulder is the same," she says somewhat wearily. "And sometimes my hips dislocate too, but they usually reduce [fix] themselves." Clare's condition is further exacerbated by severe back and neck pain, which began when she was 14, and is caused by constant muscular spasm.

How does she deal with all this suffering? "I wasn't brought up to be negative about anything," she declares brightly. "I've always been encouraged to take things in my stride." Given her most commendable professional achievements, her positive attitude to life and her stylish appearance, it is clear she doesn't feel sorry for herself.

On the contrary, she marches through life with her head held high. But certainly, ill health has always been a serious issue for her. "I missed a year of my first degree at college to have major surgery," she says. "But it wasn't as successful as had been hoped, although it did lessen the frequency of the dislocations and resulting pain. I get asked all the time, on a scale of one to 10, how I would describe my pain. I would say it's at six. Ordinary people, and even some medics, tell me on a regular basis that I can't have anything wrong with me. I may sound very complicated on the page, but in person, I look fine. They just can't make the connection between the two sides of me."

Another extremely annoying problem for her is the harassment she can experience when people see her using disabled parking bays. She has been granted the official blue disc because excruciating pain means she can't walk far. "I get abused because I look so normal," she says.

Pain affects all areas of her life. On occasion, her husband Stuart comes home from work to find her in the very same place he had left her that morning. She's been in such agony, she can't even get out of bed. And there are days when she does cry and feel fed-up. "I think people like me are entitled to such days," she says sagely. "But I really do think my work helps, because I come across people who are so much worse off than me. It allows me to see my situation from a different perspective."

What has been a very positive intervention in Clare's life is the support and input she has received from Chronic Pain Ireland (CPI). "My physio and pain consultant were running self-management courses there, and suggested I join," says Clare.

"That's how I came into contact with CPI. They run terrific programmes to help you manage your own pain. They also asked me to take part in the nationwide My Pain Feels Like campaign, which aims to help people explain their pain so they can get, and receive, an accurate diagnosis and treatment.

"Some 89pc of people with pain don't know how to talk about it. Another 52pc of people like me, get frustrated trying to explain it," Clare says. She says CPI also has an invaluable multimedia guide called Pathways Through Pain, comprising practical information on and questionnaires about managing pain.

Clare is also feeling the benefits of taking good care of her body. "Exercise, meditation and relaxation are a huge part of my pain management. I also have to watch my diet. Some of my medication makes me feel drowsy and suppresses my appetite. So if I do manage to eat three meals in one day, that's a big achievement; I just don't feel hungry. But Stuart is a great support and makes sure I eat well. He also has to do my hair when the pain is more severe than usual."

In March of this year, Clare was fitted with a pump. This delivers medication through a small tube running up her spinal column, to surrounding areas, and lessens the effects of the spasticity.

"Because of the pump, my body is more relaxed, so I suffer more dislocations," she explains, while adding that she also takes additional medication several times a day. However, the pump often dictates what she wears. "Some clothes I can't wear at all, because the pump is quite obvious. But I'd much rather have the pump than trendy skinny jeans."

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