Immunity precautions have been fact of life for some before Covid-19

Rheumatoid arthritis, cystic fibrosis and transplants prepare many for new normal

Fiona,  Niall and Ivan O’Neill: Niall has rheumatoid arthritis and is vulnerable to common illnesses such as colds in ways that may not be immediately clear.

Fiona, Niall and Ivan O’Neill: Niall has rheumatoid arthritis and is vulnerable to common illnesses such as colds in ways that may not be immediately clear.

 

Since the new coronavirus crash-landed into our lives, “new normal” has become the go-to phrase to describe our altered reality. It is an umbrella term for the upheavals, great and small, that have taken place in Ireland and beyond in response to the pandemic.

What often gets overlooked are the thousands of Irish people living with conditions that weaken or “compromise” their immune system, for whom there is much about this normal that is not so new. Pandemic or no pandemic, those with cancer, lupus, Crohn’s disease and myriad other conditions live with a heightened awareness of the threat of infection and the importance of being immuno-aware.

In the most extreme cases, this awareness can be a matter of life or death.

“This is our norm but, at the moment, everything is multiplied by a hundred,” says mother-of-two Fiona O’Neill who lives in Co Tipperary. O’Neill’s eldest son, Niall (14), has rheumatoid arthritis, treatment for which includes low-dose chemo injections. This suppresses his overactive immune system, stopping it attacking his joints but leaving Niall vulnerable to common illnesses such as colds in ways that may not be immediately clear. As a consequence, O’Neill is highly vigilant when it comes to infection.

“On the grapevine, other parents will say, ‘Oh, this person’s daughter has chickenpox’ and I’d go, ‘Sorry what, chickenpox?’” she says. “I’d have to straightaway ring Crumlin and say, ‘There’s an outbreak of chickenpox in the school – what do I do? Do I send him in, do I keep him home? What will I do?’ Every other parent would be like, ‘Oh, here we go again, it’s the flu, it’s a cold, it’s chickenpox’, whereas I have to ring Crumlin and find out what the story is.”

The risks to Niall’s health from everyday illnesses are significant. “If Niall were to get shingles or something like that, he’d have to come off all his medication,” explains O’Neill. As a result, “all his joints would flare up. Niall suffers with arthritis in his knees and his ankles and his feet; it’s all lower. His knees would balloon up.” This makes mobility difficult and painful, an especially cruel scenario for an active 14 year old who loves kayaking.

‘Vicious cycle’

This situation produces what O’Neill describes as a “vicious cycle” where managing Niall’s condition means “trying to keep him on his medication so that he’s pain-free, but his medication has his immune system shot”.

Protecting Niall from sickness also requires regular social distancing, including avoiding crowds and long queues on holidays and seeing family remotely through Skype if a member is ill. It can sometimes mean withdrawing from school. “Even before the decision was made to close the schools, Niall was out of school about three weeks because I made that decision,” says O’Neill, who had been monitoring the threat of coronavirus as a matter of course. “I wasn’t running a risk. Believe it or not, Niall was in hospital when we got a text message to say there had been a contact [with coronavirus] in the school, when everyone was coming back from skiing trips. But I knew myself, I said, ‘We’re fine because he hasn’t been in school for the last two weeks anyway.’”

In recent times, this acute awareness of infection has become second nature in Ireland, but for the O’Neill family it is part of everyday life: “Little things like that, that everyone takes for granted, this is our norm.”

Karyn and Joe Moynihan: “The reality of getting a transplant is that you are immunocompromised forever afterwards,” says Karyn.
Karyn and Joe Moynihan: “The reality of getting a transplant is that you are immunocompromised forever afterwards,” says Karyn.

Since the arrival of coronavirus on our shores, “immunity” has become a popular topic but it is important to understand what it refers to. “The immune system is a very complicated thing in your body that protects you against infection. It’s there to fight viruses and fight bacteria and fight all the nasty germs,” explains Prof Luke O’Neill, a leading immunologist from Trinity College Dublin’s school of biochemistry and immunology. “It does this wonderfully well, most of the time.”

He mentions conditions such as HIV, which attacks the immune system, and auto-immune diseases like rheumatoid arthritis that involve immunosuppressive treatments, as cases where our immune system’s ability to respond to infection is “dampened”. Our diet, exercise habits and other lifestyle factors can also produce reduced immunity. “We know people who don’t get a good night’s sleep because of insomnia, they’ve got weaker immune systems,” says Prof O’Neill. “We know people who are nutritionally deprived, and this of course especially applies in developing countries – their immune systems don’t work because there’s not enough nutrients to keep the immune system going.”

Maintain vs boost

For those concerned about cultivating a healthy immune system, he recommends approaching immunity as something you maintain rather than “boost”, a term he sees as “a bit of a marketing word”– “You want to maintain your immune system. Just keep it healthy. That’s all you have to do. We don’t really think you can take stuff to really boost it. It’s just a case of just keeping it normal, keeping it healthy, and it’ll do a great job for you.”

An immunocompromising condition many Irish people are familiar with, given we have the highest rates of it in the world, is cystic fibrosis. Avoiding illness is absolutely critical for sufferers as infections scar their already-fragile lungs, causing damage that can lead to the need for a transplant. “If somebody is sick, we have to stay away from them because a cough or a sneeze or a tickle in somebody’s throat is a two- or three-week hospitalisation for us,” says Ashe Spillane from Kerry, describing what it is like to live with cystic fibrosis, and not just during a pandemic. “For me in work sometimes, someone comes in with a scratch in their throat and, literally four or five days later, I’m in hospital with a 20 per cent drop in my lung function.”

Ashe Spillane: “A cough or a sneeze or a tickle in somebody’s throat is a two- or three-week hospitalisation for us,” says Ashe who has cystic fibrosis.
Ashe Spillane: “A cough or a sneeze or a tickle in somebody’s throat is a two- or three-week hospitalisation for us,” says Ashe who has cystic fibrosis.

Spillane’s employers in the retail sector are very supportive, asking those who work in her section to stay home if they are unwell, but in a wider context, risks still remain. For Spillane and other cystic fibrosis sufferers, this means always being attentive not only to their own behaviour but also that of others. “We’re no stranger to it,” she says of the hygiene practices and general awareness the public have been encouraged to make part of their routines during the pandemic. “Especially during flu season, we have to be extra vigilant. People aren’t aware of it themselves and aren’t taking the necessary precautions for other people so it’s up to you to do it. It’s like people who are immunocompromised, the responsibility is on us rather than everyone being responsible for their own behaviour.”

Given how much those with immunocompromised conditions are already forced to juggle and the danger infection presents, it is no surprise that the lack of awareness Spillane describes can be deeply frustrating.

‘Particularly susceptible’

Self-isolating is something we are all becoming experts in, but recent transplant patient Karyn Moynihan got a head start. The immunosuppressant drugs Moynihan must take to ensure her body does not reject her new kidney leave her immunocompromised. Now cocooning in Inchicore and feeling much better, she was particularly vulnerable when she returned home from hospital in January. “You pretty much have to try and avoid crowds and enclosed spaces for at least eight to 12 weeks after you get home,” she says. “Those couple of weeks right after, you’re particularly susceptible to colds and flu and whatever is going around. When I got home, it was very much a case of, if anybody called to the house, basically they were barred if they had a cold or anything like that.”

While most transplant patients go on to lead full and active lives, being immunocompromised is something they live with. “The reality of getting a transplant is that you are immunocompromised forever afterwards,” Moynihan explains, “because you need to keep the organ safe but unfortunately that means you are that bit more susceptible to getting sick”. She adds that while you do get to live normally, “you need to stay on top of your medications, wash your hands and all that kind of stuff”. It’s a sentiment echoed by Moynihan’s father, Joe, who underwent his own kidney transplant in 2009: “I’ve literally never looked back. And thank God I’ve never had an infection, which is an issue with a lot of people who are immunosuppressed with transplants, and they find themselves back in hospital. So touch wood it will stay that way.”

For people living with immunocompromised conditions in Ireland, although coronavirus presents particular challenges, it can also act as a teachable moment. “This increased spotlight on it means people’s basic awareness of what the immune system is will go up,” Prof O’Neill says. “People will now learn how to keep their immune systems robust, which is great, and they’ve certainly learned how not to spread infections.”

Like him, Ashe Spillane hopes this moment will build a lasting understanding when it comes to infections and personal responsibility: “With the pandemic, people have actually realised how easy it is to infect another person. I think maybe that’s one possible good thing to come out of all of this – that people are more aware of that, how easy you can transmit something to someone else.”

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