“The pain isn’t the worst thing about EB – it’s all the staring” - Debra Ireland

“The pain isn’t the worst thing about EB – it’s all the staring”

Kate Cogan was six months old when the soles of her feet began to blister. Her leg developed an infection that wouldn’t heal. Her anxious parents sought medical advice and their toddler daughter was referred by medics at Castlebar Hospital to Crumlin Children’s Hospital, where Kate was diagnosed with epidermolysis bullosa (EB).

“That was in 2005.” Kate, who is now 18. says of her diagnosis. “I think there was hardly any research done on it back then. My parents kind of had no clue what was happening. They were two 25-year-olds from Mayo in a children’s hospital in Crumlin — never a good place to be with a six-month-old baby.”

EB has four main types: epidermolysis bullosa simplex (EBS), the most common, affect¬ ing 70pc ol people who have the condition; junctional epidermolysis bullosa (JEB). a rare moderate-severe form; kindler EB (KEB), a rare form; and dystrophic epidermolysis bullosa (DEB), which has two subtypes, dominant and recessive. Kate has the latter subtype of DEB.

In the case of recessive dystrophic EB both parents are carriers of the gene but are themselves unaffected — and often unaware — and have a 25pc chance of passing it to their children.

As a child, Kate had to wear extensive padding to protect her skin from the unavoidable bumps and scrapes of childhood. “I used to have knee pads, elbow pads, shin pads. I had padding around my ankles. I really didn’t like it.” she says. “It was a big battle for me in primary school.” The bandages and padding had to be applied by her parents every morning before school.

Kate herself bandages her skin today, a process that takes hours. “When I have a lot of cuts, I’d say [it takes] probably three or four hours. Normally an hour and a half in the morning and probably an hour and a half at night as well, to change everything.”

In primary school, the teachers and pupils were very supportive of Kate, though she didn’t always appreciate it. “The teacher explained to the class when I was relatively young, so everyone knew. And the older kids knew because my sister was in the school for a while as well,” she says. “The thing that bothered me most was that they were told to be more careful with me. I know they were trying to protect me but as a five-year-old, I was like. ‘I don’t like this. I don’t like being treated differently’.”

Kate, whose sister does not have EB, became increasingly aware that she was different from the other children. “I remember when I was seven or eight. I fell in the yard. The teachers surrounded me because they knew I had EB. Whereas, if another child fell, it would have been just one teacher [helping them]. But everyone was so concerned about me and I was like, ‘Oh, there’s obviously something different here’.”

Kate has never let EB stop her from participating in life. She’s a lifelong supporter of the Mayo Gaelic football team but due to the nature of contact sports, she was unable to participate in Gaelic games. Instead, she took up horse riding, which was less problematic. “When I was in competition I’d notice the insides of my fingers would start to blister. But I liked it so much because it was the only sport I could do.”

More difficult to deal with was the unwanted attention from strangers.

“In primary school, because kids are littler, they don’t really understand. They’d see the marks on my skin and would say, ‘What’s that?'” Kate adds, “People stare when I’m on holidays. Because obviously, my legs are out. I’d find adults staring at me, looking at my scars, which makes me uncomfortable. “I’d prefer if someone asked rather than making it obvious that they’re looking at me. Because obviously, it’s noticeable. I know it’s noticeable. I don’t mind questions at all. but I don’t like the staring —just ask.” EB can be very painful.

According to Debra — the Irish charity dedicated to spreading awareness about EB; helping those with the condition to live the fullest lives possible; lobbying government and driving research — recessive dystrophic EB, the type Kate has, “is considered one of the most severe forms of EB with widespread blistering, including internally, which can affect the eyes, throat, bowels and digestion making daily life very difficult.” “It [affects] my elbows, my hands and from my knees down.” Kate says. “Because I’ve been getting cuts since I can remember, my pain threshold would be quite high, so I don’t even notice sometimes if I have a cut. But it can get quite painful. It can get to the point where I’m struggling to walk sometimes if it’s on my ankles or toes. I don’t like taking painkillers because I don’t want to build resistance to them, but sometimes I use them.”

“I’ve quite bad scars on my shins and they’re very, very weak. So it would take less of a knock to open the [scars] up again. And every time one opens, it takes longer to heal and [the skin] gets weaker. So there’s always a risk of an ulcer or infection.”

According to Debra, there are “two types of wounds: acute wounds are uncomplicated and heal quickly. Chronic wounds are more problematic and can last for months or years and need special attention.”

EB can affect Kate’s sleep and energy levels. “Because my body’s constantly working overtime to try and heal the cuts, I get tired a lot quicker than your average person,” she says. Kate is a determined, strong-willed and thoughtful young woman, with a maturity that belies her tender years.

She admits to struggling with living with EB during her early teenage years but is now accepting of the condition. “It kind of came with maturing and realising that everybody has something. When you’re 15,16, going to the beach in summer with my friends, I was always nervous and self-conscious.

I always wished for [my EB] to go away. It was more that side of it [that bothered me] than pain or managing my skin when I was that age. “I struggled a lot with it when I was 16 or 17. Especially with the pandemic. I had so much time to be in my own head. I let it get to me quite a lot in my younger teenage years. When I was little, I was kind of, ‘I don’t really care about it’.

The one thing that bothered me when I was little was not being able to play Gaelic, but as I got older, it was more my body image. I just didn’t really like looking at myself, and I’d always try to cover up. In summer. I’d wear long-sleeved tops, even if it was 30 degrees — unless we were on holidays because I don’t know anyone in Spain and Portugal, so I didn’t mind. “And, you know, 15 and 16-year-olds are mean. Girls, especially. There’s a massive emphasis on appearance. And I suppose as a 15,16-year-old, anything that made you slightly different was such a big thing. When I looked at myself, all I was seeing was my scars.”

At first, Kate was reluctant to talk to her parents. “I didn’t want to worry them. I did eventually [talk to them] though, and I started going to therapy when I was 14 or 15 to talk about it, because I realised that it actually has affected my mental health and I need to talk about it.”

She’s currently concentrating on her Leaving Cert year so has taken a hiatus from therapy but fully intends to revisit it.

These days, Kate has a ‘bigger picture’ view of her condition. “I’ve always been a bit more mature than people my own age because of my skin, because I’ve had to deal with bigger problems than other people my own age. And that’s been a huge benefit. I kept out of a lot of teenage drama and stuff like that. It’s really helped me in being even notice sometimes if able to talk about things and realise that there are more problems in the world than you and yourself and your life. It’s helped me have a bigger understanding of life.”

She recently had an epiphany that prompted her to begin using her voice and story to help others with EB. On her yearly visit to Crumlin for a check-up, she noticed a couple with a newly diagnosed baby with EB and recognised the parallels with her own parents’ situation years previously. “When I saw that baby, it made me think, ‘Maybe I should be talking about EB’. I’m sure if someone my age had talked to my parents when I was six months old, they would have been less worried and less anxious about it all.”

Kate’s parents did find support through Debra, and Kate cannot praise the charity enough. “They’ve always been really, really supportive. They’re such a great charity for kids with EB, people with EB. They give you a community as well, one [in which] people don’t look at you differently. Even with my hospital appointments in Dublin, they’ve always helped out with getting a hotel for us, so we don’t have to travel so much and get up at crazy hours in the morning. They’ve always been really helpful.”

Research into a cure is ongoing and some trials have been promising but Kate, while following developments, is not waiting around for miracles. “I feel I’m out of the worst of it now. I made it through my teenage years. I would hope for a cure for the younger generations of EB, obviously.”

Kate, who previously had her heart set on equine science, is now leaning more towards studying biomedical science in college. It’s clear that she will be an asset to whatever career she ultimately chooses. Donate to Debra to support people like Kate.