From undiagnosed to climbing Mt. Everest!

[elephant]

Great job! Thanks for your hard work!

[Daggar]

Great job!! You mentioned that you believe you had the disease for 14 years before diagnosis? What was the first sign of the disease in the early stages? Have you ever had organ involvement (kidneys)?

[marta]

Nice Cindy! Very well put. Looking forward to watching you on Survivor.

[chrisTIn@]

Hey Cindy! I just listened to the interview and I think you did a wonderfull job!
Great!!

[Cindy]

Great job!! You mentioned that you believe you had the disease for 14 years before diagnosis? What was the first sign of the disease in the early stages? Have you ever had organ involvement (kidneys)?

Thanks! Yes, 14 years! My first sign was vision lose and then MS type stuff which led to that misdiagnosis then sinus surgery etc... but no one put the pieces together. Had blood in urine but was with an HMO and that didn't go far. Thankfully I do not have kidney involvement.

[Cindy]

Rare Disease Day USA 2011 was a great success!

This was just released from NORD: Since 2012 will be a leap year, Rare Disease Day 2012 will be bigger and better than ever. And, keep sharing the message throughout the year: ALONE WE ARE RARE. TOGETHER WE ARE STRONG.

So, now where can I take the Rare Disease Day Banner next year? Any ideas?

NORD sponge Bob 1a med.jpg

[Daggar]

Ha Ha!! Motivated...

Let me think -- how about surviving a Canadian winter!! LOL

If anything like the current one we're having it may be a challenge!

[Cindy]

No way, I hate the cold!

[Sangye]

How about a walk and/or bike across America? I have no idea how long that would take, though.

[Cindy]

Interesting idea! Maybe I could connect it with a speaking tour. One problem: I am afriad to ride bikes - scared of falling - no joke. I like to stay on my feet and walking would take years.