I guess I will introduce myself..

I am 32 years old. I have known I had NF1 my entire life. I was born with the CAL. I have quite a few CALs, but most can be hidden. I also have some bumps on my arms, but they are on the underside and people only notice them if I point them out usually..or the occasional more observant/smart nurse or doc doing an assessment. I do not have any learning disabilities with it..I even graduated nursing school summa cum laude (4 year program). However, since my 3rd child was born I have been having STM problems and expressive aphasia (forgetting the names of common items..not being able to say what I want to say) at times. I think that is the most frustrating part of all.

I have 3 kids who are 5. 2.5, and 4 months..almost 5 months. Savannah, the oldest, has had the CAL spots since birth and also has ADHD, but has way above normal intelligence..just harder for her to concentrate. She is taking 5 mg of Methalyin (similar to Ritalin) for that 2 times a day. She has shown remarkable improvement on the medication. The other 2 are not showing any signs at all and I hope it stays that way.

My husband has known I had NF pretty much from the start. ( I kind of lie to myself about it, but I did not lie to guys I dated that it was hereditary. Honestly, it never bothered most of them. I still dated a lot, but then looking at me they would not see any signs. However, I did explain to them it was the same thing my mom had) My husband loves me dearly and I know that even if it did get to the point they were all over, that would not change.

My maternal granddad, my mom and her oldest sister had bumps all over their bodies. As her other siblings age, I notice the bumps on all but 1 of them (There were 6 kids in the family. Four are still living)
My mom died earlier this year of GIST (gastrointestinal stromal cancer). She was 56. From what I understand it is liked to NF1, but they are not entirety sure of NFs involvement in it. She had tumors all over her body and lost an eye to glaucoma as a baby, which may also have been a result of the NF1. She was the worst case in the family..but being born when my grandparents were in their mid to late 40s may have had something to do with that. My granddad also had many many tumors, but lived to be 93 and died of Alzheimer's. My aunt who had NF1 about as bad as they did, died of pancreatic cancer in her 60s. My other aunt and uncles seem to be in OK health to be in their late 60s/early 70s. I have one cousin who has a bad case of outward tumors and she is in her 50s..but I have not seen her in awhile. Other cousins are like me and mostly have CALs and tumors you have to point out, or are in places you can hide. My brother also has NF1 and his are also able to be hidden, but he has more self-esteem problems from it than I do. To my knowledge, there are no learning disabilities in our family other than a few with ADHD or ADD.