Hello - i have NF1 - was diagnosed a few years ago, i was 31. It has not affected my life in any way. i have numerous large cafe a lait marks and over time, a few neurofibroma's. Was never really sure what they were, Dr's just passed them off as nothing to worry about. It wasn't until i fell pregnant & having changes in my hormones that more showed up. Particular on my lower back & bottom. There is no family history of this condition in my family until now, lucky me! Sadly i have passed this onto my children as well but they are seeing an eye specialist and pediatrician yearly. My eldest son has just started school he is 5 1/2 and i am monitoring his learning, particularly his motor skills as everything else seems to be fine.
I too am wondering if NF1 is at all related to AN - did you have an AN? Have you been tested for NF1? My Dr told me you need to have these cafe a lait markings as that is a main diagnosing factor. From the information i have read, NF1 & NF2 are not really related at all despite the name!