If you've been following our blog for a while, you'll remember Carly, a young woman in Australia who has a form of ichthyosis called Netherton's Syndrome and has an incredible determination that doesn't let her skin hold her back from achieving her dreams. Carly has become a devoted appearance activist, writer, blogger and speaker, and she is a source of great positivity and hope for many families whose children have ichthyosis and other visual differences. Carly wrote a letter today to those who are growing up in a world where it is difficult to be different...
Dear Brenna, and all the little ones born with ichthyosis or a visible difference,
I want you to know that it will be OK. Life will be OK. Wonderful even.
There's a long journey ahead of you, with your daily care regime, specialist appointments and therapy. It will be hard - people will stare, say mean things and exclude you. I hope the children you grow up with are a little more aware and tolerant of diversity compared to when I was at school.
As you get a little older, it will get a lot easier. You'll find your tribe. It might be at school, or it might be in after-school sports or a club. Or it might take a little more time - like when you get a part-time job after school or start college. You'll find friends who will love you for your entire being. The way you look won't matter to them, but they'll also be so considerate of it. When you're in the trenches, they'll be by your side, just like your family.
Your family will always have your back. Sometimes it will be hard for them to see you in pain - medically and emotionally - but that's because they love you. They'll be the ones to see the real you - how much skin you shed, how much Aquaphor you get on every single thing you touch, and praise you like you've just won a gold medal at the Olympics when you reach every milestone. They'll love and fight for you.
(with my mom)
The love that you're surrounded with is so powerful. Take that love and show others the same. If you see someone who hasn't got many friends or looks a little different, bring them into your life.
Work hard at school and then at college, if that's what you choose to do after school. Sometimes we feel the need to prove ourselves when we look different. Don't put too much pressure on yourself - stress might make your skin sore.
You can be anything you want to be. I wanted to be a writer and speaker, and now I am. My ichthyosis hasn't stopped me... in fact, it's got me places. Looking different will get you noticed.
Try not to compare yourself to others too much. You're who you are - an amazing human being with so much to offer the world - and they are who they are. You may take a little more time to do things - and that's OK. The gold medal will be waiting for you. Sometimes it will be hard not being able to do things that same as others are doing - like going out in the heat, wearing sleeveless dresses and playing a lot of sports (those are the things I couldn't do - you may be able to do them!). Try modifying some of these activities - like going to play outside when the sun goes down, wear layers, and choosing a sport that doesn't hurt your skin too much.
My top two tips for daily care are: eat a good diet with plenty of fresh fruit, vegetables and protein. Ichthyosis means our bodies need lots of nutrients to grow new skin. I've also found that using sulfate-free shampoos and bath products are gentler on the skin and make my hair grow better.
And have a laugh at yourself. There are lots of funny moments having Ichthyosis. And seeing the funny side can help you through the dark days.
You don't have to explain the way you look to everyone who asks. It's none of their business. Just because you're used to being asked, doesn't mean you're going to be OK with being asked. You have the right to educate people on your own terms.
But when you do explain yourself, be polite (unless they aren't, and even so, be polite because it will make them feel worse!). Explain your needs to those who need to know and will help you. Your teachers and your future employers. It makes life a little easier for everyone.
Medical technology is advancing all the time. You may be asked to be involved in treatment trials or new creams. While actively seeking a cure hasn't been something that has interested or fulfilled me, I encourage you to try new things that may make your life a little easier. But don't push yourself too much - sometimes seeking a cure can tire you out and compromise the great life you're already living.
Join a support group, like FIRST. Go to camps. No one will get you like others with similar conditions get you. And find a mentor that you can look up to and who can guide you. They'll benefit from this relationship as much as you will.
When you are upset, talk to someone. Tell your parents or your brother, a teacher or adult friend you trust. Write your feelings down, or draw them in a picture. If things get really bad for you, talk to a professional counsellor. Don't keep your sad or angry feelings inside. You don't have to be alone.
There's beauty in difference. You're beautiful inside and out. Be proud of who you are. Look the world in the eye and smile.