Coping with Cystic Fibrosis during a crisis

Coping with Cystic Fibrosis during a crisis
Jade Needham is one of almost 1,400 people in Ireland affected by cystic fibrosis, a genetic condition that makes her especially vulnerable as coronavirus spreads through the country.

Cystic Fibrosis is a difficult condition to manage at the best of times. Helen O’Callaghan talks to Jade Needham about managing it in lockdown

About a week before Covid-19 closed the schools, Jade Needham’s mum, Liz, pulled her out of her secondary school.

“It was getting really scary, with the numbers of cases climbing. In a school environment with a lot of people in the halls, you mightn’t even know if someone was carrying it,” says the 18-year-old from Ballina, Co Tipperary, who’s in fifth year in a mixed school in Killaloe.

Jade is one of almost 1,400 people in Ireland affected by cystic fibrosis (CF), a genetic condition that negatively impacts multiple body functions including breathing, digestion and even reproduction. 

The CF community is particularly mindful of the risk of infection at any time, not to mind in the midst of the Coronavirus crisis.

“If one of my friends has the flu, she’ll ring and say ‘oh, Jade, I’ve got flu – don’t come over’. 

"With this virus, it just feels like a bad dream. I like to get out and about and do my day at school. It’s really hard to stay at home but nobody’s got any choice.”

Growing up with CF, Jade spent a lot of time in and out of hospital. Her morning medical routine is second nature to her now – using her nebuliser, doing her airway clearance and taking meds, including digestive enzymes to aid digestion. 

She’s disciplined around exercise, which is also integral to her treatment. “I really love dancing and I have a mini trampoline which I also do. I sometimes go swimming but obviously not now.” Jade has never let CF define her and key to this from the very start was her parents “positive, reassuring and supportive” attitude.

From a very young age, they encouraged me to just get up and go and not let myself get down, but to do what I wanted to do. They never said ‘you can’t do this because of CF’ – so CF hasn’t stopped me achieving stuff in my life.

Jade has been passionate about drama since she was five, and when her parents saw there wasn’t really an outlet for it once she moved onto second-level, they encouraged her to join Spotlight Stage School, Limerick. From here she got involved with Limerick Panto Society.

“Over the past two Christmases, I’ve done shows with them – Alice in Wonderland and Beauty and the Beast. It meant dancing and singing at the same time. 

"Sometimes I struggled because the dancing is so fast but everyone in the Panto Society is so accepting of me. It really kept me fit over the winter months. I felt great after it.”

As for most people, Covid-19 has seen events cancelled that Jade was really looking forward to. At time of writing, a show her drama school had scheduled for early summer is up in the air. 

Also off the cards is the 18th birthday trip to Paris she’d had organised for just after St Patrick’s Day. Like teens all over Ireland, she’s been facetiming with friends.

“A few of my friends have set up a group chat.”

Along with her CF peers, she’s on Instagram.

“Everyone’s making sure we’re OK. It’s important to do that. Everyone feels alone at the moment so it’s good we can chat to one another.” Disclosing that she has CF to friends, schoolmates and teachers didn’t always come easy however.

“I didn’t talk about it. I’d always felt really positive and that I could do anything. I felt if I told people, they’d pity me or look at me differently, so I’d only tell my really close friends.” 

That all changed when she did a bake sale in Transition Year in aid of Cystic Fibrosis Ireland (CFI). She was heartened to see “loads of people” bringing their own baked goods. The fundraiser made €330, and Jade loved seeing the support for those with CF, though most people didn’t know she had the condition. 

“I found I got more comfortable talking about it. When people asked why I’d picked CFI, whether somebody in my family had CF, I noticed I wasn’t getting upset. And when I told them, nobody judged me – they treated me like they always did.”

She also organised a non-uniform day at school for 65 Roses Day last year – everyone wore purple. “It was really nice to see everyone supporting not just me, but CF. I was able to educate people about CF in a fun, positive way.” Jade has felt the benefit of opening up about CF.

“Teachers understood better if I didn’t have my homework done and they knew I’d catch up. And if I coughed, people in my class would say ‘are you ok?’ They weren’t being mean about it, just concerned.” 

While those who’ll best understand what it’s really like to have CF are other CF patients, one of the condition’s cruel ironies is that those afflicted can’t meet each other in person for fear of cross-infection.

However, Jade loves connecting virtually with other teens with CF through initiatives organised by CFI, such as an online art programme. 

"It’s a way of expressing life with CF through art. We can talk to each other and share ideas. If one of us draws something, they can put it up on a Google platform and everyone’s saying ‘oh my God! I love your picture!"

This online programme was followed by an art exhibition in Limerick early last summer.

“It was live streamed on Facebook, so even though we couldn’t be there we could see other people’s art. It was really nice and they made a book out of our art.”

Jade isn’t currently eligible for any CF treatments, but there’s hope on the horizon as she awaits news from the European Medicines Agency of new triple combination therapy treatment Trikafta.

“They have it in the US and there’s really good feedback. There’s a girl on Instagram with the same CF gene as I have and she’s doing really well,” says Jade, adding that latest news on the drug is that it will probably be winter 2020 before it’s out.

“I can’t wait,” says Jade, who wants everyone to support 65 Roses Day (65RosesDay.ie), which has gone virtual this year – due to Coronavirus, the usual public fundraising has been replaced by an online appeal.

Cystic Fibrosis Ireland (CFI) CEO Philip Watt makes the same urgent appeal, stressing that the Coronavirus impact on the charity’s funding will be massive. 

“We get no funding from Government. We have to raise money through community events.” 

Last year, for example, CFI ran remembrance walks – about 15 in total – around Ireland in the run-up to 65 Roses Day, where people walked 6.5km in aid of those with CF. 

Thirty events were due to happen this year – they’ve all been cancelled. Likewise, the Women’s Mini-Marathon has been postponed until autumn.

“We often had 1,000 runners in that – it’s going to have a massive impact on our fundraising,” says Watt.

Monies raised on 65 Roses Day go towards services including patient grants for supports like counselling, fertility treatment, and transplant assessment; cost of a number of CF clinical staff in hospitals; and helping to raise €1m for the new CF in-patient unit at Beaumont Hospital.

- Support Cystic Fibrosis Ireland on 65 Roses Day, Friday, April 10: Donate online at 65RosesDay.ie or text 65ROSES to 50300 to donate €2 (Text costs €2 – CFI will receive minimum of €1.80.

Find the appeal on Facebook: https://www.facebook.com/CysticFibrosisIreland/ and on Twitter and Instagram @cf_ireland. Campaign hashtag is #65RosesDay.
Visit: https://www.cfireland.ie/

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