Almost half of cystic fibrosis (CF) patients fear contracting coronavirus and the potential health implications it may cause, a survey has found.
People with CF are at a greater risk of becoming seriously ill if they are infected with Covid-19.
Many CF patients have been “cocooning” since the beginning of March over fears they could contract coronavirus.
A survey published by Cystic Fibrosis Ireland (CFI) reveals that among the concerns of patients are the health implications of contracting Covid-19, the ability to access hospital care, the health impact of cocooning, and family worries about being infected and passing it on, or not being able to care for their loved one with CF.
Ireland has the highest incidence of CF in the world, with almost 1,400 people diagnosed with the disease.
It also has some of the more severe forms of CF.
On Friday, CFI is hosting its annual 65 Roses Day appeal.
But due to the lockdown it has had to cancel collections and the usual selling of purple roses.
Instead, the campaign is going virtual with people being encouraged to lend their support by donating online.
65 Roses Day is CFI’s national fundraising day and aims to raise 200,000 euro to help fund essential support and services, which are needed now more than ever by people with CF.
The survey reveals that one in three people with CF are concerned about their ability to safely access hospital care, particularly if the coronavirus emergency is prolonged.
Over a quarter of patients are concerned about how long self-isolation will last and the implications on their physical and mental health, while one in six are concerned about potential medication supply issues or shortages, with 17% reporting practical issues accessing pharmacy services and 13% have issues with food shopping.
The survey also reveals that one in four parents and relatives of people with CF fears contracting the virus and passing it on to their loved one, while one in seven expressed concern about their ability to care for their children if they are infected.
CFI chief executive Philip Watt said: “People with cystic fibrosis are resilient but this resilience is being severely tested by the Covid-19 crisis.
“From their long experience of having CF they are probably the most practised people in Ireland in relation to self-isolation and reducing the chance of catching an infection.
“However, there is considerable concern about the impact of Covid-19 the more the emergency is prolonged.
“For example, people with CF and parents are concerned about accessing hospital care and the impact this may have on health.
“This relates to accessing routine healthcare, as regular check-ups are being suspended for a long time in many CF hospitals at present. Regular, routine check-ups in hospital are an essential part of CF care and most of these are understandably suspended because of the emergency.”
Many CF hospitals are having virtual clinics in the absence of regular check-ups and use innovative modern technology, including a device that links to a mobile phone to measure lung function.
Money raised from 65 Roses Day will go towards various services, including patient grants to access support such as counselling, fertility treatment and transplant assessment, the cost of a number of CF clinical staff in hospitals, and helping to raise one million euro for the new CF in-patient unit at Beaumont Hospital.
Donations can be made by texting FIGHT CF to 50300 to give four euro, of which Cystic Fibrosis Ireland will receive a minimum of 3.60 euro.