Hi,
My name is Niamh and I’m 17, from West Yorkshire.
I started wearing wigs when I was 16. I was born with a skin disorder called ectodermal dysplasia (Hay Wells syndrome) causing alopecia. I have two wigs currently.
I cannot explain how amazing these wigs make me feel. They have boosted my confidence dramatically. I am able to do things that I was too scared to do before. I now have a weekend job, something I never thought I’d have the confidence of doing.
I had been losing my hair since I was about 10. I went to school with massive, obvious bald patches that I tried covering with other pieces of my hair using clips. I know this sounds strange but I didn’t want to wear a wig at this point because I was too scared of the dramatic change.
Everybody who knew and accepted me for me, everybody at school, who didn’t second glance at me anymore, would all begin to look and ask questions again. I wasn’t prepared for comments.
At 16, I decided that I was ready to look at wigs. When I tried on my first wig, I was terrified of change but as soon as I looked in the mirror I just felt so much braver, I felt beautiful.
It was an emotional journey but the wigs have helped me become who I am. Before I had concerns with where I would sit in class, I always had to sit at the back and was scared if a teacher was going to move me to the front. When I went out, I always liked to have a jumper with a hood or hat. I didn’t like going on public transport. You can say this had a real impact on my life.
I am now comfortable in my own skin.
I am not shy to talk about my condition or wigs. I am able to talk about everything I have been through. It’s nothing anyone should be ashamed of. If anything, it’s something to be proud of, as it makes you, you.
I want to help people who are going through what I went through, especially those of my age who struggle to cope with the situation. I want to help them feel confident again.
Niamh Woods is a guest blogger for the NFED. She lives with her family in the United Kingdom and recently started her own blog called Miss Wiggy.
I’m sharing this with my 14 year old daughter who recently started wearing a hairpiece. Her story is similar. Beautifully written! Thanks for sharing your story! ❤️
Thank you for sharing. It’s so easy for those of us with “normal” hair to forget what you face every day. I’m glad that your wig is giving you confidence and I’m going to strongly encourage my granddaughter (Clouston Syndrome) to wear one when she gets a little older.
Hey Niamh!! That’s so amazing thank you so much for sharing your story, mine is similar as well because I have Ectodermal Dysplasia too, I have Clouston Syndrome, but I share the same qualities as well. My hair is super thin and balding more and more as I get older. I take vitamins but I’m hoping to be able to get some type of wig. Is there a place I should go that might be close to NY or even online where I could get a decent price and maybe just have one or two? Curious as to what options I have in the area or even online that are good quality. Thank you so much, you’re a brave and inspiring young lady! <3 -Alyssa
Hi, Alyssa. My granddaughter has Clouston Syndrome as does her father, cousins, aunt and grandfather. We can’t trace the family back farther. I was wondering if you would be willing to connect by email or Facebook so that you can share what vitamins you are taking and what shampoos etc you use. We live just north of Toronto so not too far!