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HAPPY RARE DISEASE DAY!


Yes, I’d like to think it is a happy day because we’ve all made it one more year.  Living with Neuromyelitis Optica (NMO) can be a real pain so I’m very proud of each and everyone of you in our NMO family for continuing to fight forward and fight together.

This is also NMODiaries 1 year anniversary.  A year ago, Christine, Erin and I started NMODiaries almost as a therapeutic tool.  NMODiaries is place where we motivate each other, have a place to showcase our stories to our family and friends so they better understand our day to day lives and often, a place where we take a moment to laugh at ourselves.  By sharing our lives, we were completely surprised by how many other patients reached out to us to tell us their stories – in an attempt to inspire each other, we were inspired by you.  So, thank you for sharing your lives with us too.

Therefore, in honour of our 1 year anniversary and Rare Disease Day, we asked you, “What was your greatest accomplishment this year?”

 

 

 

“Had twins!  My boys are not just my year’s accomplishment but my life’s.” – Elizabeth Goble Brammer

 

 

 

“Although I’m in a wheelchair 90 percent, I was able to Zipline (9 lines) in Hawaii last February.” – Joni Ignacio Matthews

 

“I’ve been smoking for over 30 years and had been trying to quit for the last 3. I made myself a promise that I would be smoke free before the Guthy Jackson Patient Day last November and I was able to do it. ” – Lynn Copeland

 

 

 

“My husband reminded me that I did get my motorcycle license, and bought a bike. And, I over came my fear of heights, and went zip lining. ” – Paula Dean-Luce

 

 

 

“I got hand controls installed in my van and got my independence back!” – Tracy Owens

 

 

 

These are just a few of the great responses we received.  For more inspiration, check out the Devic’s Disease group or the My Devic’s Family group on Facebook.

One Comment

  1. Leslie

    My daughter. She is the one with NMO. She is also my IVF baby. She is also my angel. She is also my best friend and she is also 7 today. 3/12

    Comment by Leslie on March 12, 2012 at 4:52 pm

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