This week is being devoted to blogging about Cystic Fibrosis (CF).
A few quick things to consider:
> CF is the most common, fatal, genetically-inherited disease among children and young adults in the US.
> About 30,000 people in the US have CF.
> The average life expectancy of a CFer born today is about 37 years. Although, many still never make it past infancy, and some will live well beyond 37.
> An additional ten million more people (about one in every 31 Americans) are carriers of the defective CF gene, but do not have the disease.
> There is no cure for Cystic Fibrosis, but there will be one day.
> Learn more about CF by visiting CFF.org or by Clicking Here.
Nate
18 comments:
Here in Ireland, there's a huge drive on to improve facilities and services for those with CF, which at present are dreadful.
The life expectancy of anybody with CF is presently only 21, wheras in Northern Ireland it's at 31, due to different standards of care. An acquaintance, the fiancé of a CFer who died last year in her mid-twenties, said, if she had lived in America he'd have had another 10 years with her...
Yay for blogging about CF!!! Thanks, Nate - I know thousands more will know about CF because of your blog!
~Carla
I love that you are raising awareness of CF with your blog. My daughter also as CF and even though, as you say, it is the most common fatal genetic disease, many people have no idea what it is. I'm keeping you and your beautiful girls in my prayers.
Hope you don't mind, but I borrowed some pictures off of your site and posted your story on my blog today. I figure, the more people who are praying, the better. Plus it'll help get the word out about CF, which so few people know about.
Hey Nate!
I made a fundraising video and I just wanted to show ya'll:
http://www.youtube.com/watch?v=NKRdJys2Vt8
You should make one for Tricia! It has really helped motivate people to join or donate to my Great Strides team.
Still praying for ya'll!
Not to detract from CF week, but I thought maybe when your internet got back up in the hospital Tricia might enjoy this video as much as I do. It is my favorite by far on youtube.
http://youtube.com/watch?v=r5n6VN7f-0E
Thanks for spending time to talk about CF. It has always amazaed me that it is the most common genetic disease and yet so few people know much about it. What they do know often is incorrect or very outdated. I try to share about it as often as I can.
Megan
Nate,
I've looked around the blog and could not find information about whether you are a CF carrier--but I did notice you had had Gwyneth tested for CF and that her tests came back negative. Are you a CF carrier? As a mother of a child with CF, I've noticed that most people do not understand the genetics of the disease. Thanks for putting up info about CF. This will be very helpful!!
Thanks for the info! I didnt realize it was so common. I only knew one other girl with CF (that I know of) and she died when she was in 5th grade I think- but that was a long time ago.
Has Gwyneth reached 2 pounds yet?
I knew nothing about CF until your blog.
Praying for you and your girls.
I learned during my 1st pregnancy, that I was a carrier for the CF gene ... however, my husband is not. I have two girls (4yrs. & 1yr.) and wonder if they recieved the gene from me. I know their what their chances are of having a CF baby someday. Thank you for sharing all that you do. I am an addicted reader of your blog and I pray for your family everyday.
Nate - I, too, knew almost nothing about CF before your blog. Since I started reading, I discovered that I know a mom with two little boys who have CF. What a new appreciation I have for her journey. (I also wanted to let you know that I just started blogging and added a link to yours from mine.) Praying for continued health for your family!
Hi Tricia, Nate and Gwyneth,
This is Joe's Mother in law Diane Lucas. Just wanted to let you know that my husband and I have been praying for all three of you. We are so happy with Gwyneth and Tricia's progress. May God continue to work miracles. Love in Christ- Diane
Nate,
I just listed my things that Tricia has to look forward to. I'm one of applepiemom's friends!
Nate, got your post on my blog. Thanks for visiting and I really do hope that Tricia has fun reading all the crazy, wonderful things that we mommies can't wait for her to experience. Feel free to link it...a couple more mommies have already added their lists so visit again.
Since so many Americans are carriers of the CF gene, but do not have the disease, is it something that is normally screened for in children at birth? And how difficult is it for an adult to be screened for it? What exactly is the procedure?
At the cff.org site Nate linked there's a great FAQ section for most questions.
For the person who commented about the large number of unknown CF carriers and the possibility of being screened for such, this is for you as well as all others who wonder the same --- The CFF.org (http://www.cff.org/GetInvolved/Advocate/WhyAdvocate/NewbornScreening/) site has great info about newborn screening, which is a simple blood test. There is even map to see what’s happening with newborn screening for CF in each state. If you live in a state that does not require screening, there is info about how you can advocate for such screening! As far as testing for adults, many OBGYNs now recommend women take a simple blood test after they conceive. On a personal note, I highly recommend that everyone consider being screened before getting married. It is heart wrenching to learn that you are a carrier after you’ve conceived, and then to go through the scary process of awaiting results to see if your partner is too a carrier and then learning the implications for your unborn baby if your partner is also found to be a carrier.
Nate – thanks for bringing well needed attention to CF.
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