Wednesday, May 18, 2011

The E.A.S.Y. way to THRIVE (part 3)


Education and Attitude are great...but what are they, unless you share your knowledge and attitude with the world?  At least share with your friends and family!

When faced with ignorance, or judgement, do not turn away.  Share.  Share who you are and what you live with everyday.  Share lovingly, with a child that points in your direction.  Share respectfully with doctors, who need to understand more about you and your life.  Share openly with each other, so we know we are not alone.

We all know 1 in 3000 births are affected by Neurofibromatosis, and yet NF is barely recognized by the general public or the mainstream media. How many of you watched Oprah Winfrey call NF the Elephant Man’s disease? You might not like this - but its not just Oprah’s fault she doesn’t understand NF - its OURS. If we want the world to recognize us, raise money to fund research to help us, to understand and accept us - we have to SHARE ourselves with them.

Once we educate ourselves on NF we can take the Action necessary to educate others. To help our families understand us more. To open the eyes of doctors who don’t specialize in NF to treat our symptoms seriously, and get us the treatment we need - even if they didn’t know treatment existed before we walked into their office. 

How many of you would consider sharing with the media? Writing to your local paper or TV station to offer them information about NF? Not everyone wants to take it that far - but would you be willing to start with your friends, your co-workers? Maybe your church? At the very least, start with each other. 

After all, MY NF is different than YOUR NF. Building a network of NF friends who understand what we are going through can be our most valuable defense against the temptation to isolate ourselves, and the rampant depression seen in the NF community. 

When we open up to sharing ourselves at any level, we gain strength, we spread awareness, and we let the world know we aren’t going to be pushed in the corner any longer....and most of all we THRIVE!

Who are YOU going to share yourself with today?

Thrive On!

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