FYI Friday: The Overall Incidence of Urea Cycle Disorders is 1:35,000 births-but did you know that’s not your Individual Type Incidence once diagnosed? Your Individual Type Incidence is actually higher. Since there are basically 8 types of UCD, each has its own incidence of occurrence.
"How is that?” you ask. Here’s what those numbers mean:
Attached is a chart generated by a genetic counselor who studies UCD’s and they were gracious enough to pass along the chart for this community. Many people already know that Overall UCD Incidence is 1:35,000, but they sometimes confuse Overall Incidence with Individual Type Incidence.
For example, OTC, (the most common UCD), has an Individual Type Incidence of 1:56,500- not the 1:35,000 commonly known for being born with a UCD. Overall Incidence of 1:35,000 means for every 100,000 births, 2.86 babies will have a UCD. That means it could be any one of the 8 UCD types- it does not tell you which. If born with a UCD, chances of getting a specific type are referenced on the attached chart by row.
Do you know YOUR Individual Type Incidence? Take some time to look at the chart provided and find your Individual Type Incidence. We’ve added some additional figures to the chart to better put it in perspective.
So, if you have a Urea Cycle Disorder, the next time someone asks you the specific incidence of your UCD, remember it's not 1:35,000 because that’s the incidence of a child being born with any of 8 types of UCD. You are actually much "rarer" than you think. 🦓🦓🦓🦓🦓🦓🦓🦓 Be Aware-Be Empowered! Have a great weekend, CFUCDF ... Click Here To See MoreSee Less
Flu season is upon the UCD community again and we wanted to mention a great resource for answering questions about this year’s vaccine.
Are there any new FDA approved treatments for the flu in 2018? What information is available regarding the 2018-2019 flu season? Where can I get a flu shot in my zip code? What are the different flu types? These (and so many more comprehensive) FAQ’s are addressed on the CDC website, which you can go to here:
While this website does not address how a vaccine applies to someone with a UCD, this is the most current information you can take to your metabolic team should you have any questions about this year’s vaccine specific to your UCD.
**On a personal note** Our daughter hates getting shots, so when she found this comic she immediately asked, “why do ‘I’ need one?” We leave you with the comic she found- the explaining part is up to you. Hope the resource helps!
Another great cooking event coming to Salt Lake City!!!! Great time to connect with others just like you 🤗 and “You” do the cooking. These are so fun and the food is always delicious. Take home all recipes too ❤️ ... Click Here To See MoreSee Less
Today is Sweetest Day! Like Valentine's Day-but for the special "guys in our lives." CFUCDF wants to recognize all the amazing UCD Dad's, brothers, uncles, grandpa's, big brothers, and little brothers who care for those with a Urea Cycle Disorder. You're so needed and appreciated
Do you live in Ohio?
There is a cooking class scheduled to be in your area🤗
Meet family’s just like you and enjoy delicious low protein meals , get great recipes!!! Lots of fun 💕#ureacycledisorders#cfucdf