Alopecia, or sudden loss of hair, is something that most of us would dread happening.

Kate-Leigh is now raising awareness about the condition through her school’s Baldilocks and the 29 Hairs campaign.

Kate-Leigh Farrell is from Ballina in Co Mayo and this is her story:

“I first got alopecia just before my seventh birthday,” she says.

“I was only in first class in school. Bits of hair came out first, but after two weeks it was all gone.

“Although it did run in my family, it’s not something anyone expects to happen to them. My Mum has alopecia areata, which is just losing hair in patches, but I have alopecia universalis, which means total hair loss all over my body.

“I remember being confused about what happened, but it’s difficult for a child that young to understand something like that.

“I didn’t have any traumatic experiences leading up to it, but my Granny did die the year before and we were very close, so maybe that had something to do with it but I don’t know really.

“There are many different types of alopecia. Stress can trigger it sometimes, but it is in my family so that’s how I have it.

“I wore a bandana when I was in national school, but I wanted to wear a wig when I started secondary school at St Mary’s in Ballina. That was because I didn’t want people looking at me. Before that, people used to stare and think I had cancer and was undergoing chemotherapy. I’d have to tell them I’m not sick at all, I just have alopecia. I’m perfectly healthy. The wig stops all the questions like that.

“I wear a long, dark brown wig at the moment, but I’m getting a new mousy-blonde one soon. I’ll be able to have different colour hair on different days – it’ll be great.

“I’m in transition year and there’s a Young Social Innovators module as part of that, so we had to choose a project that would highlight a particular issue.

“I took off my wig in class one day and suggested we raise awareness about alopecia. That was a huge day for me but I’m glad I did it.

“Only a few people in the school would have known that I have alopecia.

“I was dreading telling people at the start, but once it was out there, it was out there. I felt so good after it – relieved. It was quite amazing taking it off but not getting the looks and the stares this time. It was a completely new transition and great for my self-esteem and confidence.

“The girls in class were really great – so supportive. That’s when we started the Baldilocks and the 29 Hairs campaign. I’m Baldilocks and the 29 hairs are my 28 classmates and TY teacher, Ms Mulherin.

“Everyone came up with loads of ideas, like a crazy hair day in school and doing radio and newspaper interviews and a balloon release to raise awareness.

“Transition year has been the best year of my life so far. I’ve had so many opportunities to do so many good things.

“Making it public about my alopecia led to a nine-year-old schoolgirl in our locality offering to donate her hair to the Rapunzel Foundation. That was amazing. We’re hoping there will be lots more who will do it, maybe girls who want to cut their hair after their Communion, if their parents agree.

“The Foundation collects undyed hair to send away to be made into Freedom wigs for people like me or people who have cancer. Natural hair is much better and young girls hair is often so long and healthy that it’s just right for wigs.

“The new wig I’m getting soon will be real hair but it won’t be that girl’s hair – that would have been cool but her hair will be used for someone else who needs it, so that’s really good.”

Baldilocks rocks

“Alopecia is something that I will have for the rest of my life. As soon as I realised that, I think I came to terms with it. You don’t need hair to live, it’s a cosmetic thing, but society these days dislikes it (a person not having hair) but I think of some tribes in Africa where they prefer to be bald, so it all depends on the way you look at it.

“Fashions change with hair, like everything else, but just because you’ve no hair doesn’t make you less than anyone else.”

Kate-Leigh’s Mum, Annmarie, talks about Kate being told she has alopecia

“The Baldilocks and the 29 Hairs project has been a really good one for Kate-Leigh and all the girls. They’ve come a long way and, hopefully, they’ll get even further with it, especially in inspiring younger girls to donate their ponytails to the Rapunzel Foundation.

“Not a lot of people know about donating hair or the reasons behind it, so it’s good to highlight that people need it. Alopecia is on my Dad’s side of the family but it was never really talked about.

“I have alopecia too but I’m lucky that it’s only patches behind my ears and at the back of my head that I lose when I’m under stress.

“I’ll never forget the moment that I discovered Kate-Leigh’s hair loss while giving her a shower one night. It was so difficult seeing her hair falling out.

“Of course, for the first couple of years we hoped her hair might grow back. We’ll always have that hope, but the trichologist we saw didn’t think so. It was harsh to hear, but, in saying that, alopecia isn’t a sickness or an illness so there’s that to be thankful for.

“Kate-Leigh wore a wig for her Communion day but it just didn’t look right. It was hard to get a wig suitable for a child at that time. She went back to just wearing bandanas from third class until first year in secondary school when she wanted to wear a wig again.

“As far as Kate-Leigh having alopecia is concerned, I believe things happen for a reason. Having it has enhanced her personality.

“She’s not the same girl as she would have been if it hadn’t happened to her. She has more confidence now. I think it’s made her stronger. It took a lot of courage for her to take her wig off in front of the class but she did it.”

Teacher comments

Kate-Leigh’s teacher, Denise Mulherin, says: “I felt very proud as a teacher of all the girls that day. Kate-Leigh was so brave, open and honest, and the girls were so supportive and caring. As a group, they have done lots of fun and creative things since to raise awareness.

“They work together as a team, coming up with creative and fun ideas to make Kate-Leigh’s dream a reality and create positive awareness of alopecia. They are all a great bunch of girls, fantastic social innovators and I feel very lucky as a teacher to be a part of such a special and worthwhile project.”