“My family is devastated. How can I help them when I am so upset myself?”

Question: I have a 5 yr old daughter that just started losing her hair about a week ago. The dermatologist said it was alopecia so I have been reading everything I can find on it. I am trying to cope with the fact that my baby girl is losing her hair which is not an easy thing to do. She has 3 older siblings how do I go about explaining it to them? I have been trying but her big sister that is 8 is taking it especially hard! Any advise would be greatly appreciated!

~ Heather


Answer: Sometimes having a child with alopecia is more devastating for the parent than the child.  I think it is important that you find support for yourself too. I was devastated when Maddie was diagnosed, but she is okay, and your daughter will

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be too.  It is important for her to know that you think she is beautiful with or without hair and that you believe everything will be okay.  I know that is hard right now, but try to take it one day at a time and to put on a happy face for your daughter.  She will take great comfort in that, and you will start to feel better too.  I don’t know if you’ve ever heard the saying, “Fake it until you make it.”  A friend gave me that advice when Maddie was first diagnosed.  I was honestly angry at first, but she was right, and her advice helped me.

I understand that your other children are taking it rather hard too.  Having a child with alopecia affects the whole family.  My oldest daughter, Helena, is just one year older than Maddie, and she took it hard too when Maddie was diagnosed.  She was in first grade at the time and was overwhelmed by everyone’s concern actually.  I think the same advice I am giving you would apply to your other children too.  Do your best to set a good example for them that you believe everything will be okay and maybe even tell them that they need to be strong for their sister, that if they have concerns or worries to bring them to you to talk about in private.  My children felt empowered to stick up for Maddie when they saw someone staring.  One of my girls, Sofie, was only 3 at the time, and was very defensive of Maddie.  She would tell strangers, my sister has alopecia, but it is not contagious, etc. She mispronounced alopecia and contagious, but her message was still loud and clear, and she felt better knowing she was helping.  I can assure you that, with your support, everything will be okay.  If you take that stance early, your daughter will benefit and be reassured by your bravery and strength.

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