Alopecia?

One of the more odd hallmarks of Rhombencephalosynapsis is alopecia. Whether male of female, most people with RS have some degree of baldness, typically patches.

I was asked by researchers conducting a study on RS to send pictures of her patches and her ears (kids with RS typically have low set forward slanted ears also) and I thought I would share.

When she was first diagnosed I remember thinking "how awful... on top of everything else my kid is going to have bald patches".

Thankfully there is a lot you can do with a good head of hair. :D

And for those of you following us for a while, yes she is going from blond to red. It definitely suits her firecracker personality. 

Posted by Kristen Fescoe