Pat's Story:
My name is Pat. I read all the stories of how neurofibromatosis was diagnosed, usually by a physician. Well I made my own diagnosis. I had a "lesion" removed from my hand when I was young, probably when I was about 10, but I'm really not sure. When I was older, maybe 15 or so, but again I'm really not sure, I was looking through some medical records of mine for something or another. It was a pathology report that said the lesion was a neurofibroma. I kind of already knew I had NF because I had several neurofibromas and some cafe'a lait spots.My mother had some medical books(she was a medical transcriptionist)and I found a picture of a boy who had NF. The neurofibromas looked like mine, although at the time I didn't have many. So when I saw the path report, my suspicions were confirmed. I am now 42 and have alot more now then I did when I was younger. Mostly on my torso, some on my back and a few on my face and arms which are noticeable more in the light. I haven't had any major problems.
I'm an RN and care for oncology (cancer) patients. It has helped me alot to care for them because I feel so fortunate compared to alot of my patients who die at a young age. I have seen alot of pain and suffering and I have helped so many people. I received my Master's degree in Nursing and now teach nursing. Only my family and a few close friends know I have NF. I am married, but have no children. I was afraid to bring a child into the world not knowing what the future may bring for him(her). My biggest regret is that we never adopted. I had to have a hysterectomy last summer because of an adenoma on my ovary. I had one a few years ago. So without ovaries, and knowing I wasn't going to have a child, I had my uterus removed. I don't miss it that much. I could go on and on but I wanted to say something to a few you whose story I read.
To Janell - You said you had high blood pressure. Did your Dr. check you for a pheochromocytoma? That is an adrenal tumor(usually benign) that can be associated with NF. It can cause high blood pressure, and at times when you are sressed (emotional or physical) you BP can go up dangerously high. When I was 24 I had some problems (which may or may not have been related to NF) and my Dr. did an "Endocrine" work- up. A pheo. is an endocrine problem. Please look into it.
Also, David from Raleigh. Don't get discouraged, keep your chin up. I live near Raleigh, maybe we've seen each other before.
To the other RN's. I too have had patients with NF and is scarey to think about the future.
Added May 1999