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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.