Search This Blog

Saturday, February 8, 2020

Raising Awareness re NF

Someone associated with a branch related to a Neurofibromatosis (NF) association outside of NY state (midwest) sent me this announcement (seen in the image atop this entry) re an outdoor event taking place in lower Manhattan today.

Its purpose is to raise awareness re NF, a medical condition which I have had since birth.

As part of the event, participants will run in their undies, as a way to "show" no shame or embarrassment re some of the consequences of being afflicted with the condition.

Why run in wearing only undies?

Well, one of the manifestations is having lumps and bumps all over the body (there can be thousands upon thousands in varying shapes and sizes).

A lump or bump is actually a neurofibroma, or tumor, which can grow on any nerve in the body and push itself up through the skin's surface.

Wherever there is a nerve, a tumor can grow.

This means anyone afflicted with the condition can have a lumpy 'n bumpy appearance, which can pose for extremely uncomfortable situations due to the general public's fear of disfigurement.

Even though I want awareness raised re this event, I am not participating in it.

For one thing I'm not keen on running in my event — especially while wearing my sling — when real feel temperatures are in the upper twenty degree range.

For another, if anyone saw me in the buff, I'd most likely scare them away from the event.

Therefore, I'll stick to my way of raising awareness about NF, which is to seek a publisher for my book about the condition.

The title (as some of you know) is Imperfect Strangers, and I've posted videos on You Tube and Vimeo which describe the project.

Pictures of cover slides for each video can be seen in images two and three. The links to view them are posted below:

Video 1 on Vimeo:
Video 1 on You Tube:

Video 2 on Vimeo:
Video 2 on You Tube:

No comments:

Post a Comment

Note: Only a member of this blog may post a comment.