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:
http://www.shwachmandiamondamerica.org/index.html (Wiz's picture is in this website!)
http://www.shwachman-diamond.org/
http://marrowfailure.cancer.gov/SD.html
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.)
Showing posts with label SDS. Show all posts
Showing posts with label SDS. Show all posts
28 February 2009
04 January 2008
The Side Bar
A quick note on the new "thing" on my sidebar.
Parade Magazine (you may receive this on Sundays in your newspaper) is having a contest for charities. They are giving the ten charities who have the most donors by January 31 $50,000. As you may know, Shwachman Diamond Syndrome is on NORD's list of rare diseases. There aren't that many patients, and it is relatively an unknown disease. It did get some press recently on Discovery Health's Mystery Diagnosis.
This is the genetic disorder that the Wiz has. It took us about 18 months for a diagnosis, and it was a pretty scary path to diagnosis. Maybe I'll write that up for you later.
If you have $10 (or more!) to spare, please consider clicking on the button at right and donating. There is also a link to SDA if you want to learn more about what the Wiz has.
Thanks for your patience!
Parade Magazine (you may receive this on Sundays in your newspaper) is having a contest for charities. They are giving the ten charities who have the most donors by January 31 $50,000. As you may know, Shwachman Diamond Syndrome is on NORD's list of rare diseases. There aren't that many patients, and it is relatively an unknown disease. It did get some press recently on Discovery Health's Mystery Diagnosis.
This is the genetic disorder that the Wiz has. It took us about 18 months for a diagnosis, and it was a pretty scary path to diagnosis. Maybe I'll write that up for you later.
If you have $10 (or more!) to spare, please consider clicking on the button at right and donating. There is also a link to SDA if you want to learn more about what the Wiz has.
Thanks for your patience!
07 November 2007
Finished things
1.) All of the concerts are finished. Game Boy did a great job. If you want to hear Mozart's Requiem, go here.
2. The Wiz went to see his GI yesterday. He is up to 41 pounds and is at 3 feet, 9 inches. He's on his 10th percentile weight curve still, so Dr. GI is happy. We are finished with specialists for awhile.
3. I finished another baby hat and thumbless mitten set for the SDS silent auction.
4. I also finished P's hat. I'll post pictures of that after she receives it, since I want her to see it first!
5. The election is over, so we are finished with election ads and the like for awhile.
6. I'm caught up on grading until Friday.
2. The Wiz went to see his GI yesterday. He is up to 41 pounds and is at 3 feet, 9 inches. He's on his 10th percentile weight curve still, so Dr. GI is happy. We are finished with specialists for awhile.
3. I finished another baby hat and thumbless mitten set for the SDS silent auction.
4. I also finished P's hat. I'll post pictures of that after she receives it, since I want her to see it first!5. The election is over, so we are finished with election ads and the like for awhile.
6. I'm caught up on grading until Friday.
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