Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation is committed to advancing the search for a cure for CF.
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Flickr pictures by Cystic Fibrosis Foundation | Showing 8 photos within the 2009 GREAT STRIDES Lafayette set

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Jimmy Lee Johnson

Jimmy Lee Johnson It is possible some CF patients only have digestive problems or respiratory problems - some have both. My son Jarrod had both - he passed away 2/3/2001 after battling for 21 years. I know how you feel. My son was diagnosed at approx. 22months age.

Amy Kirkland Thomas

Amy Kirkland Thomas I have a 2 month old daughter with CF who is only showing digestive problems so far. I was wondering if anyone could tell me at what age children normally start showing lung issues. I think I'm still in denial that anything is wrong with her since she seems so normal!

4 hours ago · Report
Susan Eckhardt Dummermuth
Susan Eckhardt Dummermuth
My daughter is 11 and we only have the digestion problems. A few infections here and there but has never been in the hospital for any lung problems. We are on all the preventative meds. too. We even do the vest two times a day. We are just hoping it will always stay that way. Good luck!!!
24 minutes ago
Katie Lambright
Katie Lambright
I'm 21 and i've only have 1 lung infection my whole life. I have terrrribbllleee digestive problems. I have stomach aches every single day for about 5 hours but some days are really bad and last the entire day. Make sure you do CPT DAILY and that should help a lot. Some foods absolutely kill my stomach and i eat a lot of food.. I have the vest and do it twice daily but some days i have to skip out bc my stomach is hurting so bad!! Good luck!
12 minutes ago
Judy AnnAngelcf Hamblen
Norma Jean

Norma Jean
I am so encuraged with the advances in treatments for CF and the possible cure in the near future. At least treatments that will make this a disease one can live with rather than die with. But I just celebrated my 65th birthday and was not diagnosed until age 53 although I was ill all my life starting school at age o...f almost 7 due to being too ill to start at age 6 and I was tutored durng part of the 4th grade and always missed a lot of school. I knew I was ill but we had no idea why other than extremely severe sinusitis. Finally at the age of 53 I was referred to HUP (Pennsyania) where a great ENT first suspected CF due to pseudonomas and my history among other signs. The sweat test was positive and the DeltaF508 gene was found. Later a 5T allele was found. I do have minor lung disease now but my sinus disease is much better due to the CF treatments and the ENT treatments. Long story.Read More

8 hours ago · Report
Elaine Nolan
Elaine Nolan
that is amazing i have heard of other people being diagnosed at 45 and 50 .you must have been doing something right.
6 hours ago
Carin Schwartz
Carin Schwartz
Are you pancreatic sufficient?
4 hours ago
Jennifer
Jennifer
You should really post your story on here ... I am sure you have much to celebrate and can remind those going through a hard time that every day is worth it!!!
3 hours ago
Megan Clancy

Megan Clancy Im wondering if anyone needs my help writing anything about CF? Im a journalist with a masters degree in genetics so let me know

12 hours ago · Report
Kathleen Quinn East
Kathleen Quinn East
Wow! That is awesome, what an incredible resource!!
11 hours ago
Norma Jean
Norma Jean
My question, I have heard that CF is the number one genetic disease with a total affected more than all other genetic diseases combined. Is this only true with Caucasians? There are many Hispanic's with it here where I live in the Lower Rio GRande Valley.
9 hours ago
Cristina Zermoglio
Cristina Zermoglio
Sure!!! we need the introduction for the 2010 walk!!We just stated to put it ofr next may.My granddaughter has CF and my English is my second language! I could send you more data for you to work on it!! Let me know and God bless!
26 minutes ago
Sherry

Sherry hey all! I know that no two cases of CF are the same (even with the same genetic combo), but our eight month old has DF508/1717~1G>A mutations and I was wondering if there is anyone else out there with this make-up and how you are doing? Sadie is doing well right now, she's mostly digestive issues so far.

14 hours ago · Report
Kathleen Quinn East
Kathleen Quinn East
Sherry,
I know this is a longshot, but I did a little research and it looks as though the 1717~IG>A mutation is most common in France. Here is a link to a particularly helpful article,
http://content.karger.com/produktedb/produkte.asp?typ=fulltext&file=hhe50142.

It really doesn't describe the disease and it's possible course. However, I was trying to find people with my daughters mutation where it is most common, so I googled (France, facebook and cystic fibrosis) here are the results.... Read More

http://www.google.com/search?hl=en&ei=f6X1Sv-eLYfcsgParKwb&sa=X&oi=spell&resnum=0&ct=result&cd=1&ved=0CAYQBSgA&q=facebook+%2BFrance+Cystic+Fibrosis&spell=1

It seems like the commonality of CF, crosses cultures, so I would give it a shot... :)
Best,
Kat
Also, if you don't find me to be crazy...friend me! :)
11 hours ago
Sherry
Sherry
thanks kathleen!
3 hours ago
Kelly Geist

Kelly Geist CFF Iowa Chapter held its 7th annual Wine Opener last evening and it was a SMASHING success! Keep the faith as we march towards the cure!!
http://www.facebook.com/pages/West-Des-Moines-IA/Cystic-Fibrosis-Foundation-Iowa-Chapter/149644749853?ref=mf

Elaine Nolan

Elaine Nolan
Just joined page and think its great, my daughter is 8 years old and has cf she is doing very well. looking at these comments about screening and sweat test just brought back all the feelings and thoughts we had when our daughter was diagnosed, it was the worst time of our lives.But we got over it and battled on and he...re we are now 8 years on and having the time of our lives. After getting over the intial shock we decided this disease was not going to beat us and it certainly has not. Ruth lives a perfectly normal life and there is no stop in her,we have never treated her any different to any of my other three chrilden .Her favourite hobby is swimming and she swims four nights a week one and a half hour sessions great form of phiso but good fun.She also enjoys horse riding,dance and diving lessons . hope this is some incourgeing info for parents who are and have only had their children diagnosed it can be a scary and lonely time.Elaine.Read More

18 hours ago · Report
Elizabeth
Elizabeth
Elaine - thank you for your input. It is encouraging for us newly diagnosed parents.
13 hours ago
Haley Kuspa 'Loiacano'
Haley Kuspa 'Loiacano'
Thanks so much for your input!
10 hours ago
Elizabeth Kempton

Elizabeth Kempton My son just had a sweat test done today. The dr called and said that one on his levels were too high and that he had to do another one. Does anyone know the chances of him having CF? He is almost 3 and half and just now testing him.

Yesterday at 8:36pm · Report
Coleen Guilford
Coleen Guilford
Our daughter had two sweat test. The first one was inconclusive as one of her sweat values was way to high. The second time she had the test we watched the clock and made sure to get the disc taken off at 45 minutes. Our doctor said that was important. The second test came back conclusive. We also had the genetic test done to confirm it.
12 hours ago
Elizabeth Kempton
Elizabeth Kempton
Thanks Everyone. We go from our second test on Monday.
7 hours ago
Daniel Robles

Daniel Robles SLC UTAH!

Utah Xtreme Paintball is having their first ever Paintball fundraiser with proceeds donated to Cystic Fibrosis! If you live near or in SLC come out and have a good time for a good cause.

http://www.facebook.com/event.php?eid=169372189246&ref=mf

Yesterday at 7:51pm · Report
Darren Smith
Darren Smith
Thanks for hleping the cause. I wish I wasn't 1000 miles away!
10 hours ago
Helen

Helen Anyone have any tips for helping with the enzyme damage done to the bum? Our three week old son's bottom is red raw. We've been using the extra strength zincofax but now his wee bottom is breaking down. We've used the cholostyrene(sp?) but it just seems to get absorbed in his diaper.... It breaks my heart to see how sore it is.....Any advice is appreciated.

Sophie Clarke
Sophie Clarke
When i was a baby, they had to do that to me, it sounds like you're having too much enzymes, what type are you using? pancreas powder or the tablets in a yoghurt or something?
12 hours ago
Lori Ledbetter Shores
Lori Ledbetter Shores
We had this problem last week. a nurse showed me how to make homemade baby wipes using a ziplock bag, some strong paper towels, a little bit of baby oil (tbsp)& a little bit of baby wash (tbsp) mix up in the baggie, wring them out and store a days worth inside the bag. ...diaper rash sucks
10 hours ago
Jennifer

Jennifer Anybody out there familiar with the 507 mutation?

Leah Therese Kappelman

Leah Therese Kappelman This cause is very close to my heart and our family, as a little girl we love has CF. We would love to find a cure.

Tammy

Tammy I added this page to learn more about CF as my Nephew who is 14 month's old has CF. I would love to see a cure.

Sasha Knezevic

Sasha Knezevic anyone knows anything about h1p1 flu shot To get it or not???

Yesterday at 3:09pm · Report
Amy Kirkland Thomas
Amy Kirkland Thomas
My husband & I got it a couple days ago b/c our 2 month old has CF and we want to protect her. I would not have gotten it if she didn't have CF. We both feel kinda icky today - sore throat, coughing, sneezing. Hopefully we'll be back to normal tomorrow!
5 hours ago
Deanna Conley Guthrie
Deanna Conley Guthrie
My kids got the h1n1 shot and had no symptoms.
3 hours ago