Why is Phoenix bald?
Phoenix has a condition called Alopecia. Alopecia falls under the heading of autoimmune conditions, which means that for some unknown reason the body attacks itself. Some other better known autoimmune conditions are rheumatoid arthritis, Chrohn's disease, type 1 diabetes and celiac disease. Alopecia happens when the immune system attacks the hair follicles, preventing them from growing. There are a few types of Alopecia; the type Phoenix has is called totalis, meaning whole head. So she does happen to have her eyebrows and eye lashes still, but no hair on her head. From time to time it looks as if hair is beginning to grow on her head, but it just seems to sprout and then fall out again.
Alopecia is not contagious. You can't catch it and it is highly unlikely that the twins will develop it. It's much more uncommon than Down syndrome, and it is very likely that even if the children at her school have met a person with DS, they have probably never seen a person who has DS who is bald.
I would say that one of my sources of anxiety about Phoenix being out in the world is being made fun of because of her hair loss. I think because of the growing inclusion of children with DS in community schools that it is unlikely that she will be made fun of because of Down syndrome. I know this won't be the case with her baldness.
How do I know this? Because I have seen children laugh and point at her - children in the playground and children at the pool. We never get questions about Phoenix looking "different" EXCEPT with her hair. It's frustrating because there is literally NOTHING that can be done to make her hair grow.
She is such a pretty little girl, and this is something that I feel may affect her self perception and self esteem in the future. In these few instances I have witnessed, Phoenix seems to be unaware of what has happened. She is very willing to tell us if her feelings are hurt, so I genuinely feel that she hasn't been affected thus far. But the day IS coming when it will hurt her feelings - and for that I have been feeling sad lately. It's a bit of a foreign feeling for me now. I haven't felt sad about Phoenix for a very long time, but this sadness if very close to the surface right now.
I contacted an Alopecia organization in the U.S. last week who will be sending me information and books to give to our school library. I'm hoping that by opening up the conversation about Alopecia, that we will prevent some of the troubles that I forsee. I also cannot be there to fight her battles when I give her up to the school system to spend her days. I just have to trust that people are kind at heart and that others are strong enough to step up if they hear anything negative being said.
I'm sure there will be those times when will make fun of her or gawk at her due to her baldness, but there should also come a lot of understanding.
ReplyDeleteThere is a girl in my community who presumably has alopecia (perhaps there is another cause for the baldness). Seeing her for the first time people have questions, but they are generally not directed to her, for example I have been asked about her, even though I don't know her personally. Everyone assumes she is going through cancer treatment and wonders why she is playing sports, but, you know, the message of her chronic baldness spreads such that everyone around her knows why and it doesn't seem to be much of an issue. I'm sure you'll encounter lots of "helpful" advice though about keeping hats on her in the sun expecially.
Over the past few years, the response is mostly curious, and not rude at all. It's only lately that I have experienced these few instances. Because we often don't have time for a long explanation, we default to a funny response. "Why doesn't she have any hair?" *Looking sad* "It's because she doesn't eat her vegetables " *shakes head*.
DeleteThis breaks my heart. Phoenix is beautiful and sounds like such a great little kid. My hope is that once the initial "why" questions are asked that it becomes just another part of her and people stop considering it, Even though Liam is probably too little to really understand I try to tell him and show him pictures/ read books about of all kinds of people. I don't want him to laugh at anyone for who they are. It is a hard thing to teach. I figure early, continuous education is the only thing we can do as parents. And to stand up for our kids when they are the one who is labeled as different.
ReplyDeleteI hope so too BBS! And it is important to teach that all kinds of people make the world a beautiful place. You sound like a great mom to Liam.
DeleteMy son Nathan has Down Syndrome and he also has Alopecia. In the grand scheme of things having Alopecia is a small thing. We've dealt with open heart surgeries, undescended testicles, thyroid issues... so the loss of his blond locks shouldn't matter much, but it does. I miss his hair. I get tired of misconceptions from people thinking he has had chemo treatments. I'm tired of everyone wanting to touch his head. I worry as he grows older. Will he feel even more different? So please know you aren't alone and hugs to you and your sweet, beautiful girl.
ReplyDeleteThank you so much. Last week Phoenix asked for her hair. She has a wig that came with her Elsa costume and that is what she calls her hair now. I think she will want a wig as she gets older, but I don't know. I worry too that it's something that will affect her self esteem. The alopecia community is great for support however. I like that I've hooked with them a bit.
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