One of my DDs is currently being seen by a geneticist and a pediatric dermatologist for a series of issues related to her skin and hair. We are still in the early stages of diagnosis, but she's definitely been diagnosed with woolly hair syndrome (part of her hair is super curly like African-American hair and part of it is straight). As for her skin, the two major contenders for diagnosis are epidermal nevus syndrome and incontinentia pigmenti - both have potential non-skin related complications (seizures, vision problems, gross motor delays, etc.). We're following up with a neurologist, opthamologist, and plastic surgeon in the next couple months. Although, DD is a healthy girl who appears to be on track developmentally - so we're hoping her concerns are going to be mostly cosmetic.
Anyway, I know that all the syndromes I've discussed above are rare, so it's unlikely that anyone on here is dealing with one of them. But if anyone is dealing with something somewhat similiar, I'd love to hear from you. Also, if anyone has any particularly reliable resources for info, please let me know. Googling is driving me crazy.