Cork woman describes living with cystic fibrosis
Cork woman Kate Walsh won’t let cystic fibrosis stop her from living a full and active life, she tells
IRELAND has the highest incidence of cystic fibrosis per head of population and some of the most severe types of the condition in the world, impacting the lives of almost 1,300 children and adults.
It is a genetically inherited disease that primarily affects the lungs and the digestive system. According to Cystic Fibrosis Ireland (CFI), one in 19 Irish people carry one copy of the altered gene that causes the condition.
In the past, few children with the condition lived to attend primary school but advances in research and medical treatments have further enhanced and extended life for children and adults with CF who are going on to attend third-level colleges, access employment, and live more independent lives, with the support of family and friends.
Cork girl Kate Walsh, 24, is living proof of that. Kate has battled CF for 10 years and has to spend up to four hours a day managing the condition through nebulisers, doing airway clearance and taking medications, vitamins and supplements. She has also been diagnosed with CF-related diabetes.
Since January 2016 she has been on the clinical trial for Symdeko, which is the latest therapy from the company that produced the ground-breaking Kalydeco and Orkambi therapies and has meant that she has less CF-related issues and complications. She will be having her tonsils removed later this month, however, following a number of bouts of tonsillitis which have given rise to chest infections.
The Togher girl refuses to let her illness define her and has carved out a career as a part-time children’s entertainer with a company called Bouncebox, which specialises in princess and superhero impersonators. From Cinderella to Wonder Woman, Batgirl to Spidergirl, it’s all about bringing a smile to children’s faces — and to her own.
“I was diagnosed when I was 14 after I got chicken pox and didn’t get better,” she explains. “It’s difficult for me to work full time so working as a part-time entertainer is perfect.
“My friend who runs Bouncebox wanted me to help out a wedding in Rosscarbery. I had never worked with kids before but I went along to the party and it all just happened from there.
“I never thought I would be able to hold a job for a long period of time but I have had my job as a princess impersonator for almost two years now and I love it.
“It takes my mind off own problems and it sure beats sitting around at home,” she adds. Also the exercise — the job involves singing, dancing and constant moving around — keeps her fit which is very important for people with her condition.
She feels very positive about her life. “Coming home and playing with my dog Milo is the best part of my day as he makes every day happier. One of my hopes for the future is that I’d like to just live independently on my own, and then maybe eventually own my own place.”
The CFI’s annual awareness day and fundraising appeal— 65 Roses Day— takes place on Friday, April 13, when volunteers take to the streets and shopping centres selling purple roses (symbol for the disease in Ireland is a purple rose).
Almost all of its funding comes from public donations and organisers are hoping to raise more than €100,000 for vital services this year.
The event actually gets its name from the way young children with this condition are taught to say the words “cystic fibrosis”, as they have to learn to live with it from a very early age.
Philip Watt, CEO of Cystic Fibrosis Ireland, said: “The money raised by CFI goes towards supporting clinical posts in hospital (5 posts), improving CF centres, supporting research, advocacy for new and innovative drug therapies such as Orkambi and Kalydeco and grants to our members for bereavement, transplant costs, exercise equipment for children and counselling.”
People are being urged to support Cystic Fibrosis Ireland on 65 Roses Day, Friday 13 April, by buying a purple rose for €2 in participating shopping centres and Spar stores across the country or by donating online at www.65rosesday.ie
Other ways to help:
Completing a 65 Roses Challenge – schools and companies are being especially encouraged to get behind 65 Roses Day by selling purple roses or organising their own 65 Roses Challenges, such as baking 65 cakes, cycling 65 kilometres, or swimming 65 lengths of a pool. Simply call Peter on LoCall 1890 311 211, email fundraising@cfireland.ie or visit 65rosesday.ie Texting 65ROSES to 50300 to donate €2 [Text costs €2. Cystic Fibrosis Ireland will receive a minimum of €1.80. Service Provider: LIKE CHARITY. Helpline: 076 6805278.
CONNECT WITH US TODAY
Be the first to know the latest news and updates
