When 19-year-old Eden from Northern Ireland contacted us, explaining she wanted to help others with alopecia, we asked if she'd be happy to do a Q&A with us and she kindly agreed. 

What was it like growing up with alopecia?

I grew up in a small village where everyone knows everyone. Growing up with alopecia, I have been completely bald for as long as I can remember, and therefore easily recognisable. I have grown to love this fact about myself as it means people remember me and often stop me in the street for a chat when they see me. I am a very sociable person and love talking to people, so I am very glad everyone knows who I am and feel able to approach me at any time when I am out and about.

What do you wish people understood about having alopecia as a child?

As a child who doesn’t know any different, your views are set by the reactions of those around you. Telling a child they are beautiful will make them feel beautiful. If a child is repeatedly told they should wear a wig in public, they may begin to feel they need to hide their baldness. If they are happy and confident as they are, try to nurture than confidence rather than assuming they need to cover up.

What was school like for you?

I went to a very small primary school with only about 15 pupils in my year, and around 90 pupils in the whole school. This made things easier for me as everyone just knew me as Eden. They never asked why I had no hair because it was all they knew of me. 

Secondary school was slightly different, when I first started people assumed I had cancer. Once everyone understood I had alopecia, I never faced any issues thankfully.

Did you ever experience any unkindness from others, and how did you deal with this?

I don’t recall ever directly experiencing unkindness from people, but when I was 16, my boyfriend at the time faced criticism from his friends for dating a bald girl. However, he never let this bother him and I soon realised that other people's opinions shouldn’t matter. I have so many people around me that love and accept me for me so the opinions of people I barely know don't affect how I view myself and my worth.

Have you always been confident with your alopecia? Have there ever been any moments when your confidence has taken a knock?

I have always had confidence thanks to my wonderful family. In 2009 my family started a charity called Helping Alopecia Trust, allowing me to meet many others with alopecia along with raising awareness of the condition. This gave me all the confidence I needed to go about life without ever feeling a need to hide my alopecia.

There have been times where I have wished I had a full head of hair, sometimes to feel more feminine, sometimes to experience getting my hair done at the hairdressers, and sometimes just so that when I’m getting ready to go out with my friends I’m not ready 30 minutes before they all are. But I think the positives of my alopecia journey outweigh the negatives by a lot so that feeling of wanting hair quickly passes. If I were told I could take a magic pill that would make a full head of hair grow back overnight, I don’t think I would take it. I have come to love my appearance and I don’t even wear wigs at all anymore. Being bald is just me and it’s who I’ve always been.

How do you respond if people stare or ask personal questions about your alopecia?

I personally love it when people ask me questions about my hair loss. I would so much rather people just ask rather than making assumptions. I want to raise awareness of alopecia and one of the best ways to do so is to answer questions people have about it. I personally don't mind when young children stare at me, because I know it is just out of curiosity. It's a natural instinct for them, and that's okay.

What would you say are the biggest positives of having alopecia?

This is a really silly thing - but I love the fact that when I'm on holiday, I don't have to plan swimming in the pool around washing my hair. Then there are the more obvious positives such as not having hair get in my face, being able to experiment with wigs etc. But for me the main positive is definitely not having to make plans around hair washing days.

What would you tell someone who is struggling with their alopecia?

It will be okay. Maybe not immediately but, with the right community around you, it will begin to feel okay. I would encourage anyone struggling with alopecia to engage in events and fundraisers to feel a sense of community and acceptance amongst others going through the same thing. If you want to stop wearing wigs every day but are too nervous, start by going somewhere where no one knows you and walk around bald. Then slowly over time you will gain more confidence going out in public without a wig, if that's something you want to do.

How has alopecia shaped the person you are today?

My alopecia has given me so much confidence. I know that every time I go out without a wig I am making a public declaration that I do not care if I stand out or look different. Everyone has something that makes them different, mine just happens to be a little more obvious than most other people's differences. And that's okay. My family have always encouraged me to be myself, and they have supported me regardless of what  'being myself' looked like.

What are your hopes and ambitions for the future?

I hope to be able to inspire others going through alopecia. I hope to raise more awareness and understanding of the condition and hopefully help others come to terms with their hair loss.

What would you say to any parents whose child has recently developed alopecia?

Try not to let your own fears shape how your child sees their alopecia. Give them space to tell you how they want to cope with their alopecia. It is so natural for parents to worry about how something like alopecia will affect their child's life; "will they get bullied?", "Should I hide their hair loss from the world to protect them?", "If it was me I wouldn't want anybody to know". These are all valid thoughts to have as a parent, but your child is their own person and they may cope better than you'd think.

If there is one message you want every person with alopecia to hear, what would it be?

You are not alone.

Thank you Eden for sharing your experiences with us. We are sure you will help inspire other young people with alopecia.