Patients Neurofibromatosis

1 reply


Topic of the discussion

Member Carenity • Community manager
Posted on

Hello everyone,

We have created a new dedicated group to neurofibromatosis. For the first discussion here in the "Living with neurofibromatosis," please introduce yourself and talk about how neurofibromatosis has affected your daily life.

Start sharing, showing support, and giving advice today.

Beginning of the discussion - 6/1/19

How has living with neurofibromatosis affected your daily life?
Member Carenity
Posted on

Hi everyone my name is Ricky. I am now almost 40 years old. Yea for me!

NF has affected my life in various ways, more so when I was younger. as I was slightly delayed in education... I had a tumor removed from my SC, which caused me a lot of pain and made my heart work a lot harder than it used to. I have basically a permanent scoliosis, so this affects my endurance and ability to take part in certain activities/things I do and also I have high blood pressure and have that under control. 

I have daily pain from the scoliosis, some days better than other. 

I am looking forward to meeting others with NF as I do not know many.