Friday, January 27, 2012

YouTube provides patients, families with NF resources

You've heard of The Cat Lady, the 100s of laughing babies made famous on YouTube, the countless furry friends doing tricks with a flying frisbee, piano, or even a plastic pool. What YOU may not know is that YouTube has its share of videos on Neurofibromatosis. Yes, NF! Some include patient stories while others detail physician descriptions on what we, as patients, have to look forward to in the future in terms of medical trials, latest science, etc. Of course, there are more graphic videos of actual fleshy tumors and even surgeries, but I didn't focus on that. There is enough information on NF -- even Schwannomatosis! -- that it can be a resource for patients and families to go to for information, for hope.

You can start out by typing in: Neurofibromatosis, Schwannomatosis, and then Children's Tumor Foundation. To give you an idea of what is available, I will feature -- from time to time -- a video I find on YouTube. Last night, I found one that tells a story of a husband and wife. The wife, Jill, calls Schwannomatosis the "intruder" that enters their lives and never leaves. It is a poignant and passionate talk told from the caregiver's prospective. When I saw it I knew I wanted to share it with you all. Warning: You may need a tissue or... two.

This talk allowed me to know there is someone else out there dealing with the same beast I am
-- every day. Because Schwannomatosis is so rare it is easy to feel alone at times. This talk
allowed me to see that others face the same obstacles I do (although I wish they didn't). The talk was honest, heart-felt, real. Take a look.

Here is the video.

It is such a powerful message. One that more patients & families need to hear.

You can access YouTube here.

Type in key words in the search box located at the upper right-hand side of the screen. Don't hesitate to make your own video & share your NF story with the world! Create more awareness!

The Children's Tumor Foundation Web site

©The Healing Redhead

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