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CysticFibrosis.com Daily

Post Title Member Posted
Reasons I love my port fourkidsmom 2:46 PM
Possible new diagnosis in 13 yr old girl JORDYSMOM 2:15 PM
I vented in a letter to the editor. MaksNana 1:12 PM
Just got listed for transplant. Lex 12:34 PM
Mediport for my 14 year old - should we do it? swatterson 12:33 PM
I'm listed! Lex 12:29 PM
Moonface side effects question!!! NYCLawGirl 12:26 PM
Alphabetical Game marchcutie 12:26 PM
who are you? NYCLawGirl 12:14 PM
just getting something off my chest marchcutie 12:07 PM
Blog Title Blogger Posted
Naked Once More stillkicking 12:21 PM
Clinic Yesterday BaylorCrew07 10:00 AM
Great Strides zoe4life 10:05 PM
Ok the first post Jbenjamin152 March 10 12:42 AM
Who Says the Doctor's Can't Be Fun?! laulau555 March 10 12:08 AM
Update 3/9/2010 kathiel March 9 7:54 PM
Facebook and Twitter laulau555 March 8 3:03 PM
Live for the Moments laulau555 March 8 2:08 PM
Update 3/8/2010 kathiel March 8 12:56 PM
I am not feeling well cfprincess09 March 7 10:13 PM

Lace up those shoes..a few days late. (00:39)
Added: 06/09/2009 • Views: 904
Discuss this video on CFTube

A video for people pre or post transplant who are ... (3:01)
Added: 03/01/2008 • Views: 2073
Discuss this video on CFTube

Art Johnson at the CFRI 20th Annual Education Conf... (06:14)
Added: 04/24/2008 • Views: 3715
Discuss this video on CFTube
What is Cystic Fibrosis?
An inherited life-threatening disease involving a genetic mutation that disrupts the cystic fibrosis transmembrane regulator (CFTR) protein, resulting in poorly hydrated, thickened mucous secretions in the lungs.
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CysticFibrosis.com Wall      
mom2caseyafrica says: to Olberding- I am not quite sure how to navigate this website correctly. If you know how you can send me a private message and we can talk.
Orangebear says: I am so sorry
Orangebear says: .
Olberding says: to mom2caseyafrica- my 10 week old daughter was just diagnosed with CF too- lets talk.
lakegirl1915 says: stuck in UNC and its so not fun. wish i had somebody to talk to
ulleanniber says: hi beth ... there are soo many beth´s on facebook ..who are u?
cffighterwithfaith says: Hi! everyone, I have cf. If you want to chat, feel free to send me a message. I'm on Facebook: Beth Oakley
Tammy15 says: to micky151- you are in my prayers, my 24 yr old is a single mom to a 4 yr old and has not been doing well .
ulleanniber says: hi .... i would like to write with other cf´s ..im on facebook: anni bergman (the girl with the camera) ^^ ..
mytrisha says: to micky151 if you would like to get in touch with me or any parents that is going through a loss my email is val.gal65@yahoo.com.
micky151 says: my daughters 23 has 3 yr old healthy son shes dieing in hospital with cf she came so close to getting on lung transplant list
mytrisha says: My daughter Trisha (26) was a cfer and she died this past Aug. I would like to get in touch with parents that have lost their child to CF.
skittles21 says: kim parent of 17 year old thought it would be nice to talk to other people with cf
mom2caseyafrica says: I am new to this website. My daughter was diagnosed with CF last friday. She will be 8 weeks old tomorrow feb 24th.
kayers3 says: Hey ya'll! I'm Kyla, 25 and just discovered this. Recently decided it would be nice to have some people to talk to that can relate!
jennifer01 says: hi everyone, i'm jennifer, 29, and i'm new here. i was hopeing to make new friends. lol it feels like only i have cf. message me :)
lakegirl1915 says: hospitial on the 26. this sucks
lakegirl1915 says: I HATE FEBUARY!
andrev77 says: hey everyone, hope you are all having a good day...going to the docs on thurs and i'm sure he ain't gonna be happy.
andrev77 says: cffighter...my facebook name is andrevafiadis, or apvafia@aol.com. talk soon.
tahliyah says: hi ia there any mums on that want to have a chat?
peanutsowers8996 says: snoww STORM! aaaah a foot of snow!
tahliyah says: hi is anyone currently on the site im trying to wk out it but im confused how do we start talking to other ppl?
tahliyah says: is anyone there
tahliyah says: hi i am 21 looing for someone to chat with my son has cf and i would love somone else to talk 2
cffighterwithfaith says: Hey andrev77, how do I find you on Facbook?
andrev77 says: Hi Beth(cffighterwithfaith), I got your message and wrote one back but it said you weren't accepting PMs. I have AOL or Facebook if that works...
sexxiej says: i have heartburn soo badd i just want to cry
lakegirl1915 says: omg so happy its snowing 13 hours and like 20 minutes till my b~day.... omg sooo happy
andrev77 says: Hey i'm Andre, 32 with CF. I don't know anyone with CF and would like some new friends to chat with. Send a message, have a great day!!
cffighterwithfaith says: Hi I'm Beth and I'm 30. I have cf. I would like to make friends. Send me a message.Thanks!
carly23 says: Hi im Carly im 23 and have cf im new to this and am looking for ppl to make friends :) msg me ! thanks x
ashleynicole says: Hi my name is Ashley and I have had CF for 23 years. I would like to make some friends or at least talk to someone
Emilysmom2004 says: emily had a rough night so no school today to tired.. We are watching cartoon's..
peanutsowers8996 says: DONATE TO HAITI! TEXT ''HAITI'' TO 90999! PEOPLES LIVES DEPEND ON IT!
peanutsowers8996 says: im in a gooood mood(:
lakegirl1915 says: I HATE PEP. AND BREATHING TREATMENTS!!!!!GRRRRR
peanutsowers8996 says: only two more days of tobi!(: no more waking up at 5:30!
dnakita says: Barbsy.. I read your story on beeing diagnosed at 60 and your history. Was amazed to read it sounded just like myself.
dnakita says: Hi, I'm 58 and was diagnosed with CF last year. I've been treated for asthma and bronciectisis for many years. Plus I've had two bile duct surgeries.
Wildcat says: Wildcat: started taking Zenpep last month. Way better than new creon!!! I take less pills and can eat anything now. Going out to eat Mexican!!!
JORDYSMOM says: Hi Emilysmom! Welcome. Everyone's "normal" is different. Glad Emily has such great big brothers. :)
Emilysmom2004 says: Emily has 3 older brother's who help every day with her treatment's! Emily goes to school and try's to live a normal day what ever normal is..
Emilysmom2004 says: I am new to this. My daughter Emily has cf she is 5 years old and we found out she had it when she was 10 mths old. It has been a rough battle.
lakegirl1915 says: thanks thats nice and ill be 15 in 17 days. and best wishes to you to ulleanniber
ulleanniber says: hi lake girls .. heelo .. we could write ... im 21 and cf .. what about u? best wishes at all
lakegirl1915 says: ok well i dont know how to do the forum thing. im new on here and just want friends with cf. can anybody help :)
lakegirl1915 says: can anybody tell me how to take a super cute video from here and put it on my facebook please. im to impatient to keep looking
barbsy says: I am 60 years old. After years of being treated for asthma & bronchiectasis and after many doctors & tests, I was diagnosed with AdultCF about a year
lakegirl1915 says: dont worry acf so am i
sweetwhite32 says: crystalina0814 i know alot about joint pain,i have RA,I am sorry your having a bad bout of joint pain today.i hope you can feel relief soon!
crystalina0814 says: Ouch, Ouch. So much joint pain. The normal "hot" bath I would take to help is a no go with these IV's. Grr.
mom2my3kids says: I am having a hard day without Baby Xander...Bless his lil CF heart...and all of yours too!
peanutsowers8996 says: back on tobi. :P
srancher says: my christmas kinda suxed im in tha hospital, but thank God i have only 3 more days left, i think..
sexxiej says: this christmas has been the best ever im feelin so well and i havent felt this good in a while
pnhuffman says: MERRY CHRISTMAS EVERYONE!
Cherylwithone says: "MERRY CHRISTMAS" to all. Have a safe and healty holiday. Remember the ones we have lost in our thoughts and prayers.
peanutsowers8996 says: back online! and got a LOT of updates
ctalbott0609 says: Lol the site hates me tonight! --Hope to see everyone in chat tonight!!
ctalbott0609 says: @Rhonda There is no scientific proof that Climate effects CF. It basically comes down to your own personal comfort level.
ctalbott0609 says: @Rhonda there is no scientific proof that climate effects CF, it basically just comes down to your own personal level of comfort.
ctalbott0609 says: @Rhonda there is no scientific proof that climate effects CF, it basically just comes down to your own personal level of comfort.
BelEAche says: Woo Hoo ! 2 hr delay tomorrow.. Mama is happy :)
rhonda21 says: is there proof that youcfers cannot tolerate moist climate? and what do docs do about it?
acf says: Hello I am new to this!
lakegirl1915 says: Don't ask for a better life, ask to be a stronger person... because no matter how good it is things can ALWAYS go wrong...
lakegirl1915 says: LonniesMom im so sorry for your lose, i know you will miss him but he is better off with the Lord. i hope things get better <3
Aspiemom says: LonniesMom, I am so sorry for your loss. Did he ever post on here? If so, what was his user name?
2005CFmom says: My condolences to you, LonniesMom. We have lost too many great people very recently. RIP
ulleanniber says: hello trentparrishracing ... where u from ?? im 21 .. ur age ;-) u are welcome here
LonniesMom says: lonniesMom, our beautiful 40 year old son was taken home to be with his Lord and Savour on Dec. 2. We celebrated his life today. The battle is over
trentparrishracing43 says: hey everyone i'm new to this but i'm 20 and i found out i had cf when i was 4 yrs old
Godforged says: anyone from dfw?
TommyBridget says: Any Husbands out there with wives that have CF?
babymilesjr says: i am new too this my 2 monthold son has cf and now me and my husbad are in the dark and heartbroken he was born at 32 weeks and now this
lakegirl1915 says: this soo sucks i hate missing school for ivs. i better be able to go to practice today
redheadedmommy says: i can post replys but i cant post a new topic ..whats up with that?
BabyGirl27 says: hello everyone!(:
ulleanniber says: ........ mhh yes ^^

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In The News
Bayer lung infection drug gets orphan status (AP via Yahoo! Finance)
Bayer HealthCare Pharmaceuticals said Thursday that it received orphan status for an inhaled drug intended to treat lung infections in cystic fibrosis patients.

Dedham event making strides against disease (Boston Globe)
Although it�s still more than two months away, supporters are already on alert that it�s time to start limbering up for the annual Dedham Great Strides Walk for Cystic Fibrosis.

FDA Grants Bayer HealthCare Pharmaceuticals Orphan Drug Designation for Investigational Ciprofloxacin Dry Powder ... (PR Newswire via Yahoo! Finance)
Bayer HealthCare Pharmaceuticals announced today that an orphan drug designation has been granted by the U.S. Food and Drug Administration for ciprofloxacin dry powder inhaler for management of pulmonary infection due to Pseudomonas aeruginosa in cystic fibrosis patients.

Fundraiser nets over $14,000 for PACFI (The Milton Standard-Journal)
MIFFLINBURG � Mike & Dot�s II was packed wall-to-wall Saturday with community members who came out to taste chili concoctions, bid on auction items and raise funds for cystic fibrosis.

How an NFL QB funds this student's education (Seattle University Spectator)
By: Kelton Sears Living, breathing and succeeding, Jonathon Brown fights cystic fibrosis Jonathon Brown, originally from Memphis, Tenn., was born with the genetic disease cystic fibrosis. One of the most common life-threatening genetic diseases in the United States, cystic fibrosis causes thick, sticky mucus to collect in the lungs and the pa...

Jaffer pleads to reduced charge, fined (Orangeville Citizen)
Instead of facing trial for impaired driving and cocaine possession, a former MP and husband of a federal cabinet minister has made a $500 donation to Cystic Fibrosis and paid a $500 fine for careless driving.

WDAM.com Laurel-Hattiesburg, MS The Pinebelt's Choice For News, Sports and Weather | USM fraternity takes on cystic ... (WDAM-TV Hattiesburg)
HATTIESBURG, MS (WDAM) - Nearly 200 people gathered on the Southern Miss campus Saturday morning to support the fight against cystic fibrosis. They took part in the 20th annual, "Great Strides Walk." The walk is a fundraiser for the state chapter of the Cystic Fibrosis Foundation.

Is Prenatal Screening For Rare Diseases Like Spinal Muscular Atrophy Too Costly? (Medical News Today)
Spinal Muscular Atrophy (SMA) is one of many serious disorders for which prenatal testing is available. SMA affects approximately 1 in 10,000 live births and is the leading genetic cause of infant mortality and the second most common autosomal recessive disorder, after cystic fibrosis. Although the American College of Medical Genetics recommends carrier testing for all couples, the American ...

Victim bound 'so tight, he died' (News 24 South Africa)
The duct tape used to tie up cystic fibrosis sufferer, Mark Truter, was so tightly wound around his face that it would have smothered a healthy person, the KwaZulu-Natal High Court has heard.

New article sheds light on the costs and benefits of screening for SMA (News-Medical-Net)
Spinal Muscular Atrophy is one of many serious disorders for which prenatal testing is available. SMA affects approximately 1 in 10,000 live births and is the leading genetic cause of infant mortality and the second most common autosomal recessive disorder, after cystic fibrosis. Although the American College of Medical Genetics recommends carrier testing for all couples, the American College of ...

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Date: Apr, 15 2010
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