Date: 07/14/2021

Q: How do you feel more comfortable to go out with your child when people stare and even make faces when they see the scale on the scalp. We have been really nervous walking into a crowd. I know saying hi to people or smiling may help. How do you get your mind ready for people to react or stare? Does anything make it better?

A:

• Ignore them, or make faces back ??
•  hate this too… sometimes I ignore it. Sometimes I have the guts to nicely say, “No, she’s not sunburned. She has a genetic skin condition.”
• Personally I just show some confidence, even if I'm faking it. I'll say hello or smile and it generally makes people feel guilty for making an assumption about you in the first place. If they make a face, I will make a face back though ????
• For me this is the hardest part about being a mom, wanting to shield my daughter from the brutal world of stares and rude faces. You just have to do it! You have to set the example for your child to be as an adult one day. Go forth and smile and be proud of your child. If you see them stare and make faces, I've learned to stare back! Or make the same faces back to them! It’s all how you carry yourself and how your child will mimic that, with confidence!
• Totally in the same boat. We didn't go out much last summer because my son was just born in May and was super small and has photophobia on top of ichthyosis. This summer we've been out and about a few times and people can't help but stare it seems like. I try not to let it get to me but of course it's hard. My son has no hair either and he's got a shunt that is blatantly obvious in his head too so it's like no way he will never NOT stand out. But I'm going to do my best to make him as confident and comfortable in his skin as possible. ??
• My son with lamellar ichthyosis is four, and he has lots of confidence, he says hi or hello even to those who don't show love and an interest in him, but he still starts talking with everyone. And I proud of him. He is smart too. Everyone has their health problem. If we did not make faces they have to learn not to make faces or stare.