Maria's Story:

Hi I am a 30 year old mother with NF1. I found out I had NF when I was 6. My mother thought there was something wrong when I was much younger, but doctors told her she was mad. I then had a operation when I was six to remove the lump, but they didn't remove it, as it would grow back later. I have several lumps which affect my right side, and now I am beginning to show signs of raised lumps on my skin and slight headaches. Also I haven't been seen by a doctor since I was about 12. I have a large lump in my right breast which I would like to have removed. I don't know a great deal about this. My 6 year old son Danny has been told that he has NF1 too which I already knew because of his cafe-au-lait spots. He has no lumps as yet, but he has to have a scan of his head next year.

If there is anyone that can give me some more advise please free to e-mail me. I would be very grateful.

Many thanks,
Maria and Danny

Maria / Added October 2000