Alopecia: ‘I couldn’t bear the thought of her losing her hair’

Mother and daughter Yvonne and Shannon Kinsella both suffer from a severe form of alopecia, which means they have no hair anywhere on their bodies

Yvonne and Shannon Kinsella. Photograph: Crispin Rodwell for the Irish Times

Yvonne and Shannon Kinsella. Photograph: Crispin Rodwell for the Irish Times

 

Yvonne Kinsella had watched broken-hearted when her daughter Shannon lost her hair, supporting her as she struggled to cope. Thirteen years later, when her own hair fell out without warning, the tables turned. Now, it is the daughter who is determined to help her mother, as she grapples with becoming bald, and the implications of alopecia.

Shannon had just become a teenager when she first noticed hair loss. “We were on holidays in Spain. I got into the shower and loads of hair came out in clumps. I thought, ‘could it be from getting my hair dyed or something’ – I had dyed it once. Then when I was blow-drying my hair, it was falling out all over the floor. Within about five days I couldn’t go out without a hat. All the top of my head was bald, just tiny strands of hair left.

“I had no idea what alopecia was at the time, no idea why this was happening to me. My GP was saying, it could be stress, it could be hormones, it could be environmental. He sent me to a dermatologist, and she was so raw. She just added: ‘you’re going to lose all your hair’, and referred me to a wig-maker. Mam came with me, and two of my friends, and when they were shaving the little bit of hair that was left they were all crying, but I was just like a rock, stone cold. I knew I had to get through it.”

Shannon’s parents, Yvonne and John, would go on to spend thousands of euro every year on wigs for Shannon. “They’d arrive every eight weeks – €300 for the hair, and then €130 to get it cut and coloured,” recalls Yvonne. “But sometimes in the middle of the eight weeks the hair would just matt, and you wouldn’t be able to get it out, and she’d be stuck in the house until another one arrived. She missed out on so much over the years.”

“They were human hair wigs, and when you first got them they looked fantastic,” says Shannon “but as the weeks go on they’d just deteriorate. Sometimes, for the last week or two they’d be so bad I’d just sit in crying. When the hair was matted it stopped me from attending school, parties, birthdays, even family events. What I get now are synthetic wigs.”

The cause of Shannon’s alopecia has never been established: “They have no idea what caused it. It’s alopecia areata, which means for some reason my white blood cells are attacking my hair follicles as if they’re a foreign body.”

“When we got the biopsy done it said it was environmental – which could be anything,” adds Yvonne. “I was like Erin Brockovich. trying to get to the bottom of it, because there were other kids around here losing their hair too. At the time, this alopecia support group had started up in Galway, and I went to a Dublin meeting in the Red Cow Inn. Twelve people turned up. A woman handed a sheet of paper out for names and addresses, and eight of us were from Carpenterstown. Either they, or their children, had lost their hair.”

Though a friend in Shannon’s own class had alopecia, the girls never spoke about it as teenagers. “We were too self-conscious. She lost it the year before I did. Another lad up the road also lost his hair, and there was a teacher in the school, and other pupils. But I felt so alone.

‘A rough time’

“I suffered a lot with depression. A pal of mine had died just after I lost my hair and that had an effect on me as well. I went through a rough time, but luckily I had good support from family and friends.

I found school very hard. I was absent quite a lot. I was never teased, but I was always aware of my hair loss, and it stopped me doing a lot

“I found school very hard. I was absent quite a lot. I was never teased, but I was always aware of my hair loss, and it stopped me doing a lot, like going to PE, as I didn’t want to get changed in case my hair would come off while taking off my uniform.”

The loss of eyelashes and brows added to her difficulties. “I would wake up with runny eyes and wouldn’t go in to school, and I fell behind. I ended up leaving school in fifth year to go into beauty therapy. I just wanted to be able to cover up brows and lashes, to learn how to disguise my illness more. A guidance counsellor helped set me up with Galligan’s [beauty college], and I qualified when I was 16. I even wrote a thesis on hair loss for my final exams, because it really interested me on how to cover it all up.

“What gave me a boost every day was doing my own eyelashes and drawing on my eyebrows. I got really good at it. When I was 16 my mam got me my eyebrows tattooed. The tattooist was drawing the outline and I said: ‘No. I want to do it’. I could do it better.”

There was short-lived elation five years ago when the hair on Shannon’s scalp began to return over seven months. “I was living in Vietnam. I was doing yoga, I was exercising a lot, eating very healthy. I had just got into a new relationship, so I suppose I was at my happiest. My hair started to come back – I would have almost been able to go out without my wig on – and even little bits of lashes had started to come back. But then, as soon as I moved home it all fell out again. So that did lead me to believe that it was something to do with this area, or Ireland in general.”

From 13 until I was 25 I had my body hair – I used think it was ironic I had to shave – but after I had my second baby, everything went

The extent of her alopecia later spread. “From 13 until I was 25 I had my body hair – I used think it was ironic I had to shave – but after I had my second baby, everything went. There are different types of alopecia. Alopecia universalis is what I have now, where you lose everything everywhere.”

It was seven months later that her mother’s alopecia began. “At the end of September last year my son was getting married in Spain. I arrived on the Tuesday night – they were getting married on the Friday – and had a shower. A lump of hair came out in my hand. I was 50 at the time and I thought, maybe it’s just hormones. By Thursday, I’d filled half of a Lidl plastic bag with hair.

“I didn’t want to upset anyone by telling them, so on the day of the wedding I said to the hairdresser: ‘do you have anything I can disguise it with?’ She put a fake bun at the back of the hair, just to disguise the patch.

“I was devastated. A week after I came home I had nothing left. I was just back from the wedding and of course I was broke, but I knew that I needed a wig quickly to avoid embarrassment in a new job. I was on my way into Moore Street, to buy something at one of the African hair shops to put on my head, when a friend rang. She told me: ‘Go out to Aidan Fitzgerald’s in Blackrock. He has a wig ready for you.’ She had sent him a photo of me, and he had cut a wig exactly like my hair. He wouldn’t even take any money off me. He said ‘you’re going through enough of a hard time. You didn’t even get a chance to prepare for this.’

“It was really, really tough. However – though this might seem like a weird thing to say – I was lucky that Shannon had gone through it; because I was saying in my head, ‘my little girl lost it at 13. Your life is half over. Be grateful you’ve got through that length of time without it’.”

Photograph: Crispin Rodwell for the Irish Times
Photograph: Crispin Rodwell for the Irish Times

At first, just the hair on her scalp fell out. “That was bad enough, but when my eyebrows and eyelashes went about January/February of this year, it completely broke me. I’d sit in the car and cry my eyes out. Your eyebrows just shape your whole face. It’s only when they’re gone that you realise the difference they make. I could walk straight on to the set of Star Trek and get a part.”

Shannon was shocked at the onset of Yvonne’s alopecia. “I couldn’t bear the thought of her losing her hair. I’ve had this much longer, so it’s easier for me. She’s so strong, and I knew she would get through it, but I also know the eyelashes, the eyebrows, are something you become really self conscious about. And eyebrows are such a huge thing now. Even when I was growing up it wasn’t as big a deal.”

Semi-permanent eyebrows

Shannon decided to learn how to give her mum semi-permanent eyebrows that mimicked hair, a process known as microblading. “It’s very popular here now, but it has been huge in south-east Asia for years. I’d had it done in Vietnam. I’d always wanted to do a course, but they’re very expensive. However, as soon as mam lost her brows I knew I needed to do it for her. It makes such a difference to wake up and not have to draw on eyebrows every day, or to worry about them staying on.

“I trained with PhiBrows because they use a particular way to outline the brows, so that you get great symmetry. If you’ve hair loss you don’t want to be going around with two misshaped brows – that has happened me with microbladers previously. They also have a service for people with hair loss, ‘Pay with a Smile’. So if you’ve undergone chemotherapy you can get free eyebrows. That was something I wanted to get involved in.

“My mam was my very first model. We use a microblade. It has tiny little fibres, and what that does is create hair-like strokes with a pigment. It takes about two hours. It’s so rewarding to see people’s faces afterwards. After doing my mam’s brows, I cried.

“I’m now freelancing for local salons, but I’d love to look after anyone with alopecia, because I know it would be comforting to chat to someone who has it too. I would have loved to have had that when I was younger. I used to say to my parents, you don’t know how I feel, but now my mam does!”

Like her daughter, Yvonne now has alopecia universalis, and her blood results also show the elevated white blood cells of alopecia areata. “There’s inflammation all over the place. But everything else came back fine. The doctor ruled out lupus. My thyroid was okay. He said: ‘you’re not in menopause. You’re not lacking in any vitamin. It’s not stress. It has to be environmental.’ Something has triggered this, but we don’t know what.”

She has recently been in contact with other locals who have experienced alopecia too: “But we may never know what has caused it, and you don’t want to be scaremongering. I’m now on a two-year waiting list for a dermatologist they think may be the best to look at it, and that’s going private!”

I’m a television producer and I love working with people, meeting people. But I find that I don’t even make eye contact sometimes. I’ve never felt as low

The lack of nasal hair and eyelashes leaves both women more prone to colds, hay fever and other health issues. Shannon has had severe sinus problems recently, and even as Yvonne talks her nose and eyes stream. “It’s almost constant,” she says. “I keep boxes of tissues in the car.”

It has also had mental repercussions. “My confidence has gone completely. I’m a very different person. I’m a television producer and I love working with people, meeting people. But I find that I don’t even make eye contact sometimes. I’ve never felt as low.

“I had to build my courage up to go to the local gym, because I knew I couldn’t do it with my wig. I had it off and I went into the Jacuzzi – the ladies only area. This woman was staring at me and she said: ‘do you have cancer?’ She was very abrupt, but I said: ‘No, thank God. I’ve an auto-immune disease and hair loss is part of it.’ She stopped for a minute and then said: ‘are you not ashamed of yourself looking like that?’ I answered: ‘well I am ashamed of myself, but I can’t go hide under a rock.’ And she paused and said: ‘well there’s other people here who have to look at you.’ And she just got out of the Jacuzzi. I sat there and I cried. I couldn’t get out. I haven’t built up the courage to go back yet.”

However, Yvonne’s approach to her alopecia has inspired her daughter. Heat and skin irritation have forced her to occasionally go wig-free in public, and Shannon has decided to follow her lead. “I never thought I’d reach a point where I was confident enough to go without hair, to talk freely about it. But, since mam’s hair-loss I put up my first post ever on Facebook without any hair on. It was my first time ever saying this is me in my own skin. I’ve also gone out in different wigs. Before that I wanted to blend in. Now I’d prefer to stand out. I’ve accepted it so much more.”

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