THE Republic of Ireland has the highest incidence in the world of Cystic Fibrosis per head of population.
More than 1,400 people here are living with the degenerative lung and digestive system condition.
Kate Walsh, from Togher, is one of these people, having being diagnosed following a bout of chicken pox when she was 14 months old, the remnants of which left her with an affected chest.
However, Kate, who will be 28 in June, has bounced back and is now walking 3km a day, with a target of walking 65km during the month of April, while also raising funds for the organisation Cystic Fibrosis Ireland.
Kate is smelling the roses, as part of the annual 65 Roses Day fund-raising initiative.
“After all I went through in my teens and twenties, I’m glad that I’m able to help raise funds for C.F Ireland,” says Kate, who at 21 had her first hospital admission.
“In-patient stays became more frequent in my early twenties,” adds Kate, who works as a receptionist.
“I had to have a port-a-cath inserted.” This is an implanted device which allows easy access to a patient’s veins.
Kate saw a significant improvement in her condition when she began a new treatment, called Kaftrio, for the condition.
A major part of the Cystic Fibrosis community’s annual fund-raising is 65 Roses Day, which this year falls on April 9.
“My sister recovered after contracting chicken pox,” says Kate, speaking about her CF diagnosis.
“I developed chest problems afterwards and these issues, combined with other health complications, led to my being referred for further testing, including a sweat test which confirmed a diagnosis of Cystic Fibrosis.”
She was only a tot when she began a treatment regime for CF which included nebulisers, medications, and airway physiotherapy, and her health began to improve.
“When I was three, I had to have my first set of IV antibiotics. These became a frequent occurrence throughout the years,” says Kate.
But her school-days were still some of the best days of her life.
“I went to school, no problem,” says Kate. “There were no hospital visits, even though I missed some days at school. And I was constantly on antibiotics.
“In primary school I hadn’t so many chest infections. Because I was younger, there was less scarring.
“I played on the soccer team and I played tennis.”
As Kate grew older, the condition took more of a hold of her.
“As I got older, I got more infections,” says Kate.
“The constant infections took their toll. I took part in fewer activities.”
Were her younger care-free days scarred as a result of CF?
“I could go out with my pals,” says Kate. “I went out walking with them and I could play with them. Later on I was able to go out to the nightclub.”
She’d have to pace herself.
“I’d have to prepare myself before going on a night out,” says Kate.
“The stairs was the main struggle and I’d get breathless climbing the stairs.
“In the night-club I’d get to the first level and stay on the same level for the night with my pals.”
Despite the young woman’s restrictions because of CF, Kate has refused to let CF define her.
When she was 21, she got a lot sicker as a result of having CF.
“I realised I was a lot sicker after my 21st birthday,” recalls Kate. “I felt a catching in my chest and I had to go on more medication and more antibiotics.”
Kate, not one to put her life on hold, got her first job in a garage near where she lived.
“I worked as a bar-maid too in the Savoy,” says Kate.
“I enjoyed that.”
She reached more dizzying heights swapping beer taps for a magic wand.
“I started working as a princess impersonator!” says Kate, laughing.
“I entertained kids at kids’ parties. They loved that and I loved it too!”
But even her magic wand couldn’t magic away the condition that impinged on her happy life.
“As my health deteriorated, I couldn’t jump or dance or manage the equipment I needed to entertain the kids.”
She still made the magic happen.
“I got a job in Leisure World on reception in Churchfield. The management and staff there were very good to me and very accommodating.”
In 2016, Katie commenced a trial for the CFTR treatment, Symkevi. Since then, she has seen a decrease in hospital admissions and a marked improvement in her overall health.
“Symkevi changes lives,” says Kate.
Did the drug change her life?
“I was on it for four years and I improved, having much less need for IVs, but I couldn’t continue on Symkevi for much longer. It was a temporary solution for me.
“The way I can describe being on Symkevi was that I got more ‘normal’ sicknesses like colds, temperatures and tonsillitis. I hadn’t long periods of ill health due to CF.”
Fund-raising provides support to those living with CF and their families. Generous fund-raising from the public has also led to new treatments for the condition, including Kaftrio, which has resulted in improvements for those with CF.
Magically, in 2020, Kaftrio helped Kate.
“It was life-changing for me,” says Kate.
“It is the best drug for CF ever.
“From having 27% lung function, I now have 57% lung function. It is incredible for me. My energy is amazing.
“I no longer have to nap during the day. I can exercise more and I just feel great! Previously I had CF related diabetes and I have overcome this.”
She has overcome a lot of things, with her eye on the 65km finish line in April.
“I have always tried not to let C. prevent me from doing anything, but the simplest of activities would require a lot of planning,” says Kate.
“Now I can confidently say there is nothing holding me back.
“I am looking forward to receiving the vaccine (for Covid-19(, getting back to work and life returning to normal.”
Kaftrio gave Katie a new lease of life. The median survival age for CF, lengthened to 41 years, is testament to improved treatment, drugs and research.
“Kaftrio will add at least another 10 years to my life,” says Kate.
“I can look towards my fifties, which seemed unlikely when I was 21.”
Kate has blossomed.
“I was tiny! From 50kg in weight, I am now a healthy 62kg.”
The mundane everyday tasks that required constant effort for her due to fatigue became effortless.
“I have much more energy, I’m not breathless anymore,” says Kate.
“I coughed up phlegm a lot before, sometimes flecked with blood. Not so much anymore.
“I have a bike and I cycle every day. Last year I practised cycling on a stationary bike in the front room.”
Others are feeling the benefits too. “I can walk my dog every day.”
Kate has found the magic formula to enhance her life.
“I’m going to get jogging and complete 65km in the month of April for CF. Ireland.
“The 65 Roses Day raises funds and awareness about CF.”
Everything isn’t always rosy in the garden of course.
“I have some bad days when I’m a bit chesty,” says Kate.
“I still cough up mucus with flecks of blood which is a little scary. But then it goes away.
“But that’s nothing compared to what I used to go through.”
Her 28th birthday will be more magical than her 21st birthday.
“Twenty-eight was a milestone I thought I’d never reach. I was so sick back then,” says Kate.
“My team in CUH were incredible.
“Going forward, I hope my health continues to improve so I can go on to live an independent life not dictated by my condition.”
Life at 28 has brought a whole new dawn for Katie.
“I’m really looking forward to celebrating it in June,” says Katie.
And she’ll make the magic happen.
65 Roses Day annual fundraiser for CF is on April 9.
You can donate online at 65rosesday.ie