By Cate McCurry, PA
An Irish charity saw a surge of almost 300 per cent in calls to its helpline from people seeking emotional support during the first year of lockdown.
Debra Ireland helps 300 people living with the skin disease epidermolysis bullosa (EB) and their families.
Chief executive Jimmy Fearon said 66 per cent of the calls the team received between April 1st, 2020 and March 31st, 2021 were seeking emotional support – a three-fold increase compared with the previous year.
“Just over a third of our service users made those calls, which really gives a good sense of the scale of the effect lockdown had on people with EB and their families,” he added.
The charity wants to use EB Awareness Week, October 25th to 29th, to help the public to see “beneath the bandages” to understand the emotional, social and mental health impact of living with a long-term condition such as EB.
The skin of people with EB blisters at the slightest touch, which means that painful bandaging must be applied every 48 hours – and sometimes daily.
Claudia Scanlon, a Debra Ireland patient ambassador, said: “I think it’s a topic that has not really been talked about.”
The 17-year-old, from Terenure, has recessive dystrophic EB, a severe form of the condition which leaves 80 per cent of her body covered in open wounds.
“Mental health is different for everyone and for me it can be multiple things,” she said.
“I have suffered from depression or anxiety which would come from the fact that I find it very hard to socialise with girls my age because I have lost many friends.
“As a result I struggle to put myself out there with new people, and I wanted to shed light on it because I know that even people with other disabilities suffer with their mental health – because disabilities are a hard thing in general.”
She went on: “Depression can come from anything for me. It could be related to friendships, or things that EB stops me from doing, or even a deterioration in my condition.
“Other teenagers can get on with their lives without worrying about disability or EB, and one of the main things I really want to highlight is that people who have mental health difficulties are often afraid to reach out.
“Sometimes you can feel like you have absolutely no-one and it can be really isolating. You know that your friends and family are there but you just don’t want to burden them – I know, because I’ve gone through it.
“It is so vital and so important to get help because it can take a really, really wrong turn when you least expect it – and it can get worse without professional help.
“My own depression is up and down, it is not a constant thing. I might have a good month or a bad month, depending on my mood.
“I’ve been going on and off for counselling for about two years and I feel like I have found the right counsellor for me in more recent times.”
Claudia is in her final year of secondary school and, after 18 months of being at home on and off, she said she has been taken aback by her return to school.
“I don’t think I have done a full week yet because I’ve been so tired and exhausted. It has been rough and very stressful with work and friendships. This has probably been my toughest year yet,” she said.
“If sharing my struggles and my mental health journey helps even one person to feel less alone, less isolated, me sharing my story is worth it for me.”
– For more information on EB and EB Awareness Week, go to https://debraireland.org/