Jen's Story:

 I am a 28 year old woman. My mother died of complications due to neurofibromatosis when she was only 35- years-old. I have tendencies for neurofibromatosis, but have not been diagnosed as of yet, mostly due to the fact that very few doctors know enough about the disease. To the best of my knowledge, my mother's (Sandra) neurofibromas turned cancerous, which I am told is very rare. I have several cafe au lait spots on my body, including a large one on my right hand. I have several tiny bumps on my body, mostly on my stomach, back, and forearms. So far I have had 2 neurofibromas removed, one from my right wrist and one from my right hand ring finger, both were benign. I have just been told I have a lesion on my right retina which I hope is unrelated to neurofibromatosis. I hope that as time goes on doctors can learn more about this rare disease.

thanks,
jen
 
 

Jen / Added April 2000