By 2005 I realized her hair wasn't normal

Here is Caroline at 2.5 years old.  There were a few bald patches where her hair had come out in handfuls several weeks prior, completely freaking me out.  Her scalp is visible.  Today, her hair has become significantly curlier, but the thickness hasn't changed much.  And she's still very much a striking blond!

It's my theory that Caroline's loose anagen syndrome is what makes her hair a platinum blond while her sisters have brown hair.  Her eyes are a dark brown along with her eyebrows.  It's a unique coloring. My mother always jokes that it's like Caroline took a bottle of bleach to her hair.

About the time these photos were taken, I was beginning to worry about why Caroline's hair never grew.  Never. Ever. Grew.  Our pediatricians did not seem concerned about her hair but it just seemed so odd: why would a kid's hair not grow?  For a while, I hoped it would get better on its own and so I didn't push the issue.  But when Caroline continued to be very small and not grow very quickly, I became worried that perhaps the hair issue was a symptom of a larger problem that hadn't been detected yet. She was sent for some blood tests that came back normal, except for a slightly elevated level of potassium.  Caroline's still very small for her age with a thin frame and I still think the LAS and growth are somehow related.

Welcome to the world of Loose Anagen Syndrome

If you're reading this, you're here because you probably have a child with LAS, or Loose Anagen Syndrome. Thank goodness that this syndrome is not harmful or fatal, but is only cosmetic in nature. But if you're the parent of a child (probably a little girl) with loose anagen syndrome, it can break your heart watching her struggle with it. That's the case with me. My sweet, beautiful 8 year old daughter, whom I will call Caroline in this blog, lives in a world where every girl has thick, luxurious, long hair. Caroline's two sisters have hair down their backs. LAS is always there to remind Caroline that she's different.

I knew for a long time that Caroline's hair wasn't "right." I scoured the web for information between 2005 and 2007, found the bare minimum of information on LAS but knew right away from the symptoms that Caroline had this syndrome. She was diagnosed by the simple act of a pediatric dermatologist examining Caroline's hair under a microscope. And, there was nothing to be done about it, no treatment to be had.

I created this blog because there is really no information out there. And I understand that; this is not cancer or a debilitating illness or disease. But perhaps my experience with and journey through this syndrome will serve to inform and help other parents help their kids deal with having "different" hair. In coming days and weeks, I'll post more detailed information, photos, and links to the best information I can find on the web, and continue to document Caroline's progression (or lack thereof!) and related issues (like self-esteem, etc.). I'd like to have readers (when there are some, someday) perhaps contribute some photos and/or stories of their own to share. See you soon.