Donna's Story:

My name is Donna I am a 26 year old mother of three, and I have NF. I have know for quite some time that I had it: My three sisters as well as my Mom also have it.

I have a very hard time dealing with the NF. I have always felt very unattractive, and was always embarrassed about my body. I would never change in gym class, and very rarely went swimming. I would do almost anything to cover my body. In the hottest of days I would wear long sleeve shirts just to hide what I had. I could not ever understand why God had allowed this to happened to me. I have always hated myself for the way I looked. I always thought no man will ever accept me, for I can not even accept myself. I am revolted at the "bumps" that invade my body. I often dream of what it would be like to have a "normal" body.

I was never too sure how far NF would or could progress, and when I hear other people's stories I often wonder how bad I will have it in my older years. I have several fibromas, and they are now beginning to appear on my face! I hope some day they will find a cure that could help us.

There is one thing that has changed my outlook on life: my husband, who accepted me for who I am. He is the most wonderful man in the world. He has always told me how pretty I am. I didn't think he understood how much NF affected my life, or what it was like to live with, until we were talking about NF one day. I told him that he had no idea what it was like having this disorder.

Then he said, "I do live with it, I see How much it hurts you, and how it affects you. I see how much you struggle day to day with it, and I live with it as much as you. WE ARE one, and your pain is my pain." From that day on I really did understand he is also affected by it.

We have three children together. My oldest son also has NF. My son has many other problems aside from the NF. He was also born with cardiac problems (unrelated to NF) which required very complex surgery. He has cerebral palsy due to complications from the heart surgery, and he is definitely an inspiration to us. He is very happy and out-going. He is also moderately learning disabled, but it is hard to tell whether his learning disabilities stem from the NF or the cerebral palsy. My other two children have not been affected by the NF (they had a blood test and it revealed they did not have it). Thank God my prayers where answered. I myself think that I have a mild learning deficit. My spelling is terrible, and I had a very hard time in school. I also have a hard time concentrating.

I think many things can trigger the fibroma's growth, such as trauma to the body, stress, surgery, etc... I know my son has numerous "brown spots" and is already getting a few fibromas, and he is only 7 years old! I don't think he would have it as bad, if he didn't have the other problems he has. These are strictly my opinions. Any input would be greatly appreciated, and I would love to hear from anyone!!

God bless,
Donna

Donna / Added October 2000