Monday, December 17, 2012

Curlytop No More?

Curlytop, missing some curls.
Two half-dollar sized bald patches suddenly appeared on Curlytop’s head. Within days, they’d merged into one big hairless patch. After Mr. Wright peeled me off the ceiling, I made an appointment with our pediatrician and consulted Dr. Google, which is always a mistake for panic-prone moms. Googling, that is, not making a pediatrician appointment.

I knew what it wasn’t – an allergic reaction, ringworm, a creative scissors mishap, poorly applied depilatory cream – and the scariest explanation Dr. Google offered was an autoimmune disease called Alopecia, which causes the immune system to mistakenly attack hair follicles, resulting in baldness. Basically, affected people become allergic to their own hair, in the most simple of terms.

Our pediatrician confirmed my fears.

Curlytop has Alopecia. Right now, we’re calling it Alopecia Areata, which means patches of baldness. If all her hair falls out, we get to call it Alopecia Totalis. There is no treatment or cure for Alopecia, so it doesn’t really matter what flavor she has. Nothing can be done to stop the hair loss or regrow lost hair faster, anyway.

Kids at Curlytop’s school are already asking questions. “What’s that on your head?” they ask. “Oh, my hair just fell out,” she says. We’re working on pronunciation of Alopecia (AL-OH-PE-SHA) so she can sound fancy when she explains it.

To be honest, it bothers me more than it bothers her right now. That may change in the future, when femininity and appearance take on more significance in her social world, and I hope I’ll be prepared to help her hold her head up through those times – bald or not. She’s seven years old now. Will her outlook change when she’s twelve?

“Autoimmune disease” is a scary word for this mama, who watched her brother’s immune system attack every organ in his body following his bone marrow transplant for erythroleukemia. Really, though, Rheumatoid Arthritis is an autoimmune disease, and I have it. I don’t think of myself as “sick,” and I need to remember that Curlytop isn’t “sick,” even though her hair is falling out by the handful.

There’s a chance her hair will grow back. There’s a chance she’ll lose more. There’s a chance her eyelashes and eyebrows will fall out. There’s a chance all or none of these things will happen, and for a control freak like me, not knowing what to expect is unacceptable. I want answers. I want to know what I can do to make it “better.”

I want a cure. There isn’t one.

For now, I’m learning. I’m learning there is no support group in our area for families living with Alopecia. I’m learning how to craft a 30-second Alopecia “commercial” for strangers who may ask if my daughter has cancer. I’m learning how to talk to kids about Alopecia – including Curlytop.

“So, the doctor says your hair might grow back. Or, some more of your hair might fall out. But what’s important to remember is that no matter how much hair you have, you are awesome and funny and great at many things and very much loved...”

“Okay, Mom. Can I go play, now?”

Did I mention it bothers me more than it bothers her?

Please visit and support the Children’s Alopecia Project (CAP) at to learn more about Alopecia Areata, and how CAP supports and helps children affected by Alopecia.

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