Neurofibromatosis Type 2

Join the Conversation on
Neurofibromatosis Type 2
133 people
0 stories
239 posts
About Neurofibromatosis Type 2
Explore Our Newsletters
What's New in Neurofibromatosis Type 2

I'm new here!

Hi, my name is Anjpanj. I'm here because
I have been living with benign brain tumours for the last 26 years & was diagnosed with the rare genetic condition known as neurofibromatosis type 2, nine years ago. I’m the only 1 in my family of 5 to have this condition. I’m reaching out to others who have this condition for help & support at dealing with a hidden disability ( mine is at the moment apart from being partially bald from my treatment).I have left sided partial deafness from an Acoustic schwannoma . I live alone in South West London. I had to give up my profession of a complementary therapist which I loved. I now make jewellery, walk & look after dogs, garden, See family & enjoy tai chi & chi gong which helps with my balance. I look forward to hearing from you…. Xxx#MightyTogether #NeurofibromatosisType2

2 reactions

NF2 or (Neurofibromatosis Type 2)

I have been fighting with this disease since diagnosis in 2001. At the time as a young 14yr old boy I thought either it was going to have zero- little affect me or I would die at a young age but either way it means I would get a girl. At least that’s what all of the Hollywood movies that my mom watched on my lifetime had led me to believe. It was six months after that diagnosis that I had my first brain surgery, must have of my ability to hear, and got introduced to what chronic debilitating pain was going to be like. No I will not bore you all with every single surgery I’ve had since then, but will say that since that diagnosis in 2001 six months ago I had my 27th major operation that includes among others 4 brain surgeries, 5 spinal surgeries, I’ve lost near complete use of my left hand as it’s curled into a deformed fist, I walk with a cane (well I weakly shuffle) cause I don’t wanna use a wheelchair or scooter less I’m in a store or airport. My feet, hands, portions of my legs completely numb. Oh and that chronic Daily pain is so bad that the doctors were prescribing me fentanyl (the medication 50-100xstronger then heroin.) until I made them take me off it cause addiction to that seemed less like a possibility and more as a matter of time. Lately it’s been hard to find motivation to get out of bed when I’ll likely be dead by 35, which really wouldn’t bother me as much if I got to have a normal life until that day. What I’ve been struggling with is finding motivation as my body slowly becomes further paralyzed and so far each days for painful then the one before it. Now before any of you worry that this means I’m considering suicide don’t. At 21 my best friend died from an undiagnosed heart condition. I saw his parents who were like my own grieve over their loss and I swore to my friend, his parents, and mine, that I’d never dishonor his death by causing my parents to feel that way by taking my own life. To be honest I don’t know why I’m telling a group of strangers now except even though I know the track this trains headed, it doesn’t mean I want to sit in bed all day everyday, without purpose. Maybe the reason I’m writing isn’t so I’ll feel less alone, maybe it’s so those of you reading it will feel less alone. Maybe that can be my purpose.

1 comment