Month: January 2013

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

“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.
“I feel so helpless.  What can I do to help my child who is losing his hair?”

“I feel so helpless. What can I do to help my child who is losing his hair?”

Maddie, age 9
Maddie, age 9

 

Maddie, age 14
Maddie, age 14

Question:

I want to raise my son to be proud and bold, and amazing and strong. And sometimes I fear that he will have a hard time — I know he will. And, because of his alopecia universalis, I worry.  What can I do to help him?

Millie, Montreal, Canada

 

Answer:

(I wrote this when Maddie was 9!)

Sounds like you’re on the same page with us at CAP in focusing on your son’s self-esteem, more than a cure or treatments.  I can tell you’re on the right track!  My daughter is 9 and has au too.  She’s had it since kindergarten and has only had regrowth once (in first grade).  I worry about her too, but over the years I have found that by focusing on her self-esteem and making sure she feels “normal” (Who’s really normal?), she is really turning into a neat kid who doesn’t let her alopecia get her down.  She has her days of course, but who doesn’t, and those “days” aren’t usually related to her alopecia.  We treat her just like our other 3 daughters, and she is busy with sports and other activities.  It wasn’t always this easy though.  In the beginning my husband and I cried (sometimes in front of her).  We bought her hats and bandanas, her grandmom knit her hats — we just wanted to “cover it up” but then we realized that we were making her feel like something was wrong with her.  Now she walks around “bald as a bean.” She has a wig, but she tells people it is “just an accessory” and it truly is: she wears it when she feels like it.  So, my point is that this whole alopecia thing is a process, and it sounds like you are on the right track.

Today, Maddie is 14, and I am amazed at how much of what I said 5 years ago is still as true as ever.  Maddie is brave and strong, and now that she is in high school, our “process” of raising a child with alopecia continues.  Maddie still has good days and bad days, but her bad days are rarely about having alopecia and usually about having too much homework or not enough free time or about her sisters getting on her nerves.  The process will continue when she starts college and so on and so on.  But we just keep taking it one day, one month, one year at a time, just like we do with our other children, just like you do with your CAP Kid and other children.  “Keep calm and carry on…..”

Betsy, Executive Director, CAP

“Will my child lose all of her hair?”

“Will my child lose all of her hair?”

So often, I am asked questions that I remember asking or wanting to ask someone who had a child with alopecia.  Through this blog, I hope to use my experience to help those with the same questions I once had.  If you have a question, please email betsy.woytovich@childrensalopeciaproject.org.  
Question:
I am wondering if/when we should expect total hair loss?  Once your daughter was diagnosed with AA, how much time did she have until she lost everything? My daughter is only 2 and just lost her first patch.
 maddie blog
 ~ Christie, Chalfont, PA
 
Answer:
Maddie never had patchy hair loss. From the beginning, her hair line receded and her part grew wider and wider until she had what looked like male pattern baldness, with about 70% hair loss.  Then her hair all grew back, and she had one spot for a few months until, rapidly, it all fell out again the following year.
It is most important to realize that alopecia is a very unpredictable disease and that each and every case is different from the next.  I tried to find patterns and things to figure out what would happen next, but I now have spoken to hundreds of people with alopecia who each have a different story to tell of their diagnosis or their child’s diagnosis.
If your daughter has only lost one small patch of hair, I would not assume the worst.  I know it’s hard, but try to be patient and hopeful as you wait to see what happens next.  What we try to teach our CAP families is that with or without hair, with your support, your daughter can live a very full life.  Hair loss doesn’t make her future any less promising!!
~ Betsy, Executive Director, CAP
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