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"I am so sorry!"
My son was diagnosed with AA at 12 months. He finally grew some hair a couple of months earlier and it started coming in nicely. Within just a few weeks, almost all of it was gone. He was left with this weird little patch of blonde curls on the top of his head that made him look like one of those cute little cartoon babies with his big blue eyes the way they are. He lost all of his eyelashes and eyebrows, too.
He is now 21 months. He has a newborn little sister and is starting to get some eyelashes and eyebrows in. We've also noticed some little fuzzies on his head, but nothing substantial. He is a very happy little guy and is so funny and very sweet.
I was at the store with him the other day and he was happily sitting in the carriage saying hi to everyone and waving, as he tends to do. This woman who was probably in her 40s was talking to him and he was flirting and having fun. She told me he looked like he was doing really well. So I replied with "Yeah, he's almost 2 and talking so well. He's a good boy and is very friendly!" And she then said he looked really healthy. I was confused for a moment and said "Well that's because he is...." She asked me if he was recovering. And I asked "Recovering? From what?" I was completely oblivious. She was apparently suggesting my son had some sort of treatment that caused hairloss! So I told her that, no, he was completely healthy and just had no hair due to alopecia. And I explained what that was, too. At first she just apologized for the fact that she was mistaken and I told her I was not offended at all and how was she to know? And she then started to apologize for the fact that he has alopecia? I told her that it was nothing to be sorry about and that he could have no hair due to something really terrible and that we are lucky, that this is just how his body is wired.
This lady was very impressed on my outlook on the situation and told me she would be a mess. She asked me how do I do it. I told her I don't have a choice. I can't control his body and neither can he.
Did it bother me when everything started to happen? Of course it did.
Did I mourn the loss of the hair that finally came in on my baby boy before he even had a real chance to have any? Yes, I did, and I am not ashamed to admit it.
But now, after 9 months of pretty much nothing happening, it just doesn't phase me. So when people ask me things like, "Is he recovering?" I don't get it. Some people say "Wow he is a huge baby!" thinking that he just is a very very large 12 month old or something. Nope.
And besides, he thinks hair is hilarious! He plays with mine and laughs and I put it on his head and he goes bananas and laughs up a storm.
I guess I just felt like noting all of this down for my own personal venting. I don't think that woman was ignorant, I just think she was uninformed. She was a very nice lady and didn't have malicious intent, but spoke her mind to a stranger, which I found to be a brave act.
But sometimes I do get irritated with people. They say things like "Oh my son didn't grow hair until X amount of months." Or "Oh my cousin didn't grow hair until she was 2, it'll come in." Well good for your son or cousin or whoever, dude, but my son DID grow hair and it fell out. The other thing I've been getting a lot of is "Oh try this diet." or "See this doctor, they can definitely help." or whatever. How about letting my wife and I be the parents to our son and you, who have no experience with this, let us be? Especially since he ISN'T even sick or anything! People don't get it -.-
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Comment by Pat on October 12, 2012 at 1:41am
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No they don't get it at all..sigh...I know just how frustrating it is when advice is given re diet or whatever - as if that will fix it - most people are well-meaning especially those like the woman at the shop yet those other comments really get my goat!
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Comment by Alliegator on October 12, 2012 at 10:43am
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No, they don't get it. A lot of people are uninformed, and from what I have seen, a lot of people feel free to speak their minds to strangers. Some people are concerned, some people are uninformed, some are ignorant, and some are nosey. I try to create awareness as much as possible so we can cut down on the number of people who are uninformed. Your son is going to be a strong man!
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Comment by Chris on October 12, 2012 at 11:01pm
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Thank you for sharing. I do believe it is a hard disease to deal with since most people don't understand Alopecia. Your son already has a great attitude and sounds like he will grow into a strong individual.
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Comment by Christine on October 14, 2012 at 3:30am
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People really don't understand alopecia, it is so frustrating sometimes. I work in a hospital, you would not believe the comments that were made to me when I shared with my coworkers that I had made the decsion to shave what was left and get a cranial prosthetic, most of the nurses were so supportive, but a few of the female doctors were not, one actually joked that her husband would leave her if she even cut her hair short, it came off to me as super insensitive, I wish I'd had the foresight to ask her if her husband would leave her if she lost a Breast to cancer too? I know that may seem mean, but for some reason people don't realize that this is a medical condition outside of our control, we have done nothing to cause it and mostly can't do anything to change it. You would never say to someone with an artificial limb "have you tried glutton free, maybe it will grow back" I wish more people were aware of the reality of Alopecia. Your son already has so much going for him, with parents who are so strong about this themselves. He's a lovely boy, and is lucky for parents who accept and love him, he will grow up strong.
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Comment by Renée on October 14, 2012 at 6:02am
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Your boy is absolutely beatiful, and you raise him the way you do his going to be a lovely young man.
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Comment by Nikki - Coley's Mama on October 15, 2012 at 10:12pm
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It's awesome to have others who know how annoying this can be. Feel the love <3 lol Christine- I am also horrified at the prospect of a doctor saying that to someone. Especially someone they know! So wrong!
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Comment by Kristy & Jemima on October 17, 2012 at 8:05am
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My little girl (in the picture) is eight and has had alopecia areata since march this year.. She had the wildest unruly hair that she loved..she has now lost about 90% of it but since July has lots growing back ..sh wears ahead scarf every day and her school is fantastic with her as are her friends we have not encountered anyone who asks if she is recovering ..I'm sure it will come and you handled that really well so now I feel stronger that I could cope if someone did! Your little boy seems happy and I love that he loves playing with your hair you are setting him up to be a strong confident boy ..all credit to you x
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Comment by Leslie Mader on October 17, 2012 at 8:34pm
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Nikki - You sound like a great mother and I think that the more people or educated and made aware of AA or any other form of hair loss the better off we all will be. As an AU Alopecian, I take the opportunity when it comes to educate and bring awareness to this awful disease. But, we are blessed since it's NOT life-threatening. I too had a dr. (female) tell me that I was being too sensitive about my hair loss. This was at a time when I was trying to find out why my hair was falling out, did not even know what AA was. I never spoke to her again and never recommended her to anyone. I see her partner and also told him what she said.
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