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.