28 February 2009

Rare Disease Day

Today is Rare Disease Day. For those of you who don't know, NORD (National Offices of Rare Diseases) defines a rare disease as one that has fewer than 200,000 patients in the US or about 1 out of every 1000 people. Shwachman-Diamond Syndrome, which is what the Wiz has, is one of these diseases: the incidence of SDS in the US is 1 out of every 75, 000. There are so many of these diseases (most of which are genetic) out there.

If you'd like to learn more about the rare disease in our life, here are more links:

(Wiz's picture is in this website!)

The Wiz is actually sick right now. He has a sinus infection (hence the CT scan). His only symptom was his asthma was worse. That's the way life is sometimes. (Wish us luck--he has to have a CBC today.)


Pattie said...

OMGosh! You know..... I think J has a sinus infection... he hasben coughing for a few months and had congestion, trying to dig a gold mine....and now his eyes are hurting...... his asthma is worse...and just reading your blog made me think, "DUH..bring him in!" remember when he got sick, but did nto run fever and he's been sick ever since.... I never thought that his asthma getting worse could be a sign of sinus infection. DUH! The last two days, he has been complaining that his eyes hurt...and I started thinking he might have one...

what do you think? We were in Cincy this past week...so I havn;t had time.

oh-- do you knit the socks or crochet them? I want to learn to knit.. got a book on how to knit and then one on knitting scoks. If I fail, I will send it to you. LOL I failed at crocheting...a friend said knitting is easier..but I am not so sure that would be the case for me. ha ha ha I may fail at both

Kate said...

It's not the most common way to present with a sinus infection, so I'm glad we're still seeing the allergist. But, yeah, no fever, or anything. Not even a cold to start it off. It doesn't hurt to see if that's what J has too.

I knit--I can only do single crochet and I use that for trim or for casting on. I'd be happy to knit you another pair of socks, if it doesn't take this time. :) When things didn't make sense from the book, I'd look it up on the internet. There are a bunch of videos out there.