Neurofibromatosis

[lpnstudentin2010, LPN]

I was wondering, because I have it, how many of you have heard of Neurofibromatosis a.k.a NF a.k.a von Recklinghausen disease. I am not really looking for info because I already know about it but I have heard that it is a fairly common disorder so I was wondering whether it is known among nurses.

[Da Monk]

I've taken care of several patients over the years. I know there a different degrees of the illness. I hope your problem is of a lesser degree. The patients I cared for were not being treated for NF, but other problems and they had had NF for years. Peace!

[mariedoreen]

I have a friend who has the disease so am aware of it myself.

[Nesher, BSN, RN]

Years ago, my first most intense patient of my career had this disease- but her's became neurofibrosarcoma - thus a long horrid death, one that I have certainly never forgotten.

[NRSKarenRN, BSN, RN]

Covered in my nursing program + experience with one patient.

Taken care of many patients with Sarcoidosis with 6 Liters of Oxygen at home-yes can be a difficult passing: palliavtive care imperative.

OP: Hope you have great physician and nursing support.

[lpnstudentin2010, LPN]

I have an awsome physician here in Boston (where i live), a great plastic sergeon (my main tumor is on my right orbital, another on left breast both of those are plexiforms, then a neurofibroma on my right thigh), great eye doctor, and AWSOME nurses. I have had 4 surgeries and have always had awsome nurses. that is what made me want to be one.

[Jolie, BSN]

I cared for the newborn infant of a mother with this condition. An interesting study in medical genetics.

[Nurse Ratched, RN]

Saw a great special on the discovery channel. No professional experience.

[Hellllllo Nurse, BSN, RN]

Saw a great special on the discovery channel. No professional experience.

Same here.

I know that years ago, it was thought that John Merrick, The Elephant Man, had NF, but now it is known that he didn't. He had Proteous Syndrome.