My fight with scoliosis has made me stronger
By Michelle Murphy
FOR many teenagers, a sudden growth spurt is just a normal part of transitioning into young adulthood. But it was a different story for 17-year-old Ciara Leahy from Mogeely, East Cork.
The teen quite literally experienced growing pains when she was diagnosed with scoliosis back in October, 2015. The condition, characterised by abnormal curvature of the spine resulting in a ‘hump’ like shape on the back, can take two forms — congenital or Idiopathic. The latter predominantly affects adolescents, with teenage girls being disproportionately affected at a rate of 10:1.
Due to its sudden onset and the fact that no known cause can be detected, it came as quite a shock to Ciara, who attends St. Mary’s High School, Midleton.
“I noticed a lump on my back during the summer when I was wearing tight clothes, and one evening I was sitting on the ground doing a puzzle with my brother and mum actually saw the C shape as I was kneeling over, so that’s how we copped on to it,” she said.
Ciara’s mother, Anne, readily admits that she initially panicked when her daughter first received the diagnosis from her GP.
“When you get the diagnosis first, it’s like ‘Oh, my God’ and the first thing you do is turn to the internet — which can be good and bad!” she said.
A referral to a consultant soon followed where the initial diagnosis was confirmed, but unfortunately this was just the start of what was to prove quite an arduous journey, both literally and metaphorically, with Ciara forced to seek medical treatment in Dublin and swim therapy in Kildare.
Anne explained: “We heard about the Straight2Swimming programme from a friend of Ciara’s but it was only taking place in Kildare at the time, on a Sunday, so we used to drive up every weekend.
“We did carpool with another family but you’d be leaving at 12pm every Sunday.”
Launched in Belfast in 2014, Straight2Swimming provides swim therapy for pre and post-surgical scoliosis patients under 18 years of age. The initiative, which is free of charge to participants and is sponsored by American specialist spine medical device company K2M, is the first of its kind in the world.
Despite the long travelling distance, the Straight2Swimming programme proved to be invaluable not just to Ciara but for Anne and her husband as they found great comfort and support in meeting other parents whose children also had the condition.
“For us, the benefit was meeting other parents who were on the same journey — in particular, it was great to meet people out the other side of it. Just by sitting down and talking to other parents who had been through it, we got huge amounts of information,” said Anne.
Although fortunate enough to be able to access private health care, Ciara still had to wait almost two years from the time of diagnosis to the time of undergoing the operation to straighten her spine. This, as Anne explains, is due to the lack of staff available in Ireland to carry out the corrective surgery.
“We had private health insurance so we were lucky — the public system is ridiculous — but two years is still a long time in a teenager’s life. There is only a limited pool of surgeons in the country and the theatre in Crumlin is only operating a few days a week because they haven’t got the theatre staff to man it,” Anne said.
Whilst waiting for her operation, Ciara’s condition rapidly deteriorated in a short space of time, with the curvature in her spine significantly increasing.
“I had a huge growth spurt between Christmas and the new year and the curve increased by 20 degrees in a few weeks. I began the Straight2Swimming programme in February and that September I had the surgery. The surgeon encouraged me to keep up sports and to keep fit though and that definitely paid off.”
Last September, the Straight2Swiming programme came to Cork where it operates out of the Mardyke Arena pool every Saturday evening for both pre-op and post-op patients. This was a welcome relief to Anne and the rest of her family.
“When it came to Cork it was great because prior to that I was always trying to ‘farm’ my other kids out to people on a Sunday because your whole day is taken up driving up to Kildare,” said Anne.
The dedication of the Straight2Swimming staff and their belief in the programme is evident in the fact that co-founder Edel Convery and Programme Director Edel Brown travel down to Cork each week to facilitate young people in Cork and surrounding areas who have been diagnosed with scoliosis.
Straight2Swimming was formally launched in Cork just this month.
After Ciara’s operation, performed by Mr Pat Kiely, Consultant Spine Surgeon from The National Children’s Hospital — affectionately referred to as ‘Magic Hands’ by patients and colleagues alike — Ciara literally reached new heights.
“I went into surgery 5’7 and came out 5’11! The swimming definitely did help me with my fitness levels — I was walking on the first day after my surgery.”
Now, six months after the operation, Ciara says she enjoys “a totally new quality of life”.
“I used to be really self-conscious — I used never tie my hair up in a pony tail, never tie it up in a bun.”
The young woman is eager to offer hope and encouragement to other young women who may be going through the same experience.
“Scoliosis is a problem but it can be fixed and it’s amazing what surgery can do. I had a white board in my bedroom and I used to have a quote written on it: ‘When something bad happens to you, you have three choices — let it define you, let it destroy you or let it strengthen you’ — I let scoliosis strengthen me.”
MORE ABOUT STRAIGHT2SWIMMING
Straight2Swimming, a unique programme for young people with scoliosis, has announced its expansion to Cork. Already a huge success in Belfast and Kildare, the world’s first tailored swim program for pre and post-surgical scoliosis patients under 18 years of age is now available at the Mardyke Arena.
First launched in 2014 in Northern Ireland, the free of charge swimming programme has proved a great success and further expansion into other countries is in the pipeline. The Cork launch was held on March 10 and attended by specialists in the world of adolescent psychology, sports medicine and orthopaedics as well as participants and their families.
The brainchild of Philip and Edel Convery, the Straight2Swimming programme has grown to include 150 young swimmers in fewer than three years, and the new addition of the Cork session each week will initially enable up to 25 additional swimmers to join the programme whilst cutting the travel commitments for many members who travel across the country each week to attend.
Programme Director Eimear Brown explained how far they have come and their delight at launching in Cork.
“Straight2Swimming launched in September 2014 in Belfast with just eight swimmers. Since then the programme has grown to include over 150 members in May 2017, and we are delighted to announce that the weekly free of charge swimming sessions is coming to the Mardyke Arena in Cork.”
Echoing Eimear’s sentiments, Mr Pat Kiely, Consultant Spine Surgeon from The National Children’s Hospital, said: “I welcome the addition of a third Straight2Swimmingprogramme in Cork to accommodate the growing number of young people eager to take part in this unique initiative. Straight2Swimming is the most positive single action in enhancing scoliosis patients’ capacity, allowing them to be themselves and all that they can be.”
Scoliosis is a condition that affects as many as two in every 1,000 children in Ireland. With many patients facing extensive wait times to receive their corrective surgeries, Straight2Swimming has offered an invaluable service, working to help build body confidence among its swimmers, improve swimming techniques, and boost overall fitness, therefore reducing recovery times for many who have undergone spinal surgery, and acting as a gateway for many young people in returning to sport.
Funded by US specialist spine medical device company K2M, the weekly swimming programme also provides a supportive forum for the families of those who are impacted by the condition as they help their loved ones through the painful condition. While young swimmers train parents gather each week to consult with experts in the field of scoliosis and treating young people with the condition to compare stories and experiences and offer support for those going through similar journeys.
Source : Evening Echo , 23 March 2018