Cystic Fibrosis Support Group

Cystic fibrosis, (CF) is a common hereditary human disease which affects many different parts of the body, including the lungs, pancreas, gastrointestinal tract, reproductive organs, and sinuses. This support group is dedicated to those coping with cystic fibrosis. Find support, meet others who face the same challenges, ask questions, and share your experience.

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  • deleted_user

    When the Going Gets Rough

    1
    Hey there, My name is Waydon and I'm a 22 yr. old college student with a full-time career. I was diagnosed with CF at birth and up until about two-three years ago I was considered to have a mild case. That was before I started college and moved away from home. Never being able to hold onto any form of insurance for very long I simply got by on the charity of a team of doctors I've known since...
  • I'm a 33 year old male. In 2006 I had an x-ray for a nasty cold, I was 25 or so at the time. The findings: Heart is normal size. Lungs are hyperinflated. Aorta and pulmonary vascularity are unremarkable. There is not acute lung or infiltrate or congestive heat failure. Impression: Hyperinflated Lungs, no acute cardiopulmonary disease.In 2009, i had bronchitis and doctor only said they found it on...
  • Megan4

    "Potential resource/outlet"????

    1
    Hey I was just wondering if anyone has contacted the "potential resources/outlet" post By: SchlesATL on the Home Page topics? Any Luck? Is it legit?
  • amandamaillard

    Hello To All

    0
    I have been on here before but can't seem to access my old account so here i finally am again. What's new and who wants to chat?
  • Whatsauname

    What is CRMS??

    1
    I am confused, I thought a CF patient carried two genes w/the CF factors.My grandson has only 1 CF gene factor (strictly my terminology).Does this mean that he has CF?. He gets med care at a major CF center.I am trying to understand all of this..Pls advise..
  • jersey88AD

    Should I be tested for CF

    1
    My son was diagnosed with hirschsprung disease which can results sporadically or from CTFR gene. His mother who is hispanic had negative test for CF. My son also had newborn screening and everything was fine. However we did not do sweat test. He does have allergies, frequent ear infections which I read is not typical of CF.However myself, 32 male with no symptoms. I had pneumonia when I was 15...
  • deleted_user

    spouse of cf'er

    0
    Hello. I am just reaching out in the hopes that maybe there are others in a similar position who may want to talk from time to time, offer each other support, a place to vent, share helpful info and so on. I have been with my husband, who is approaching his 40th bday... for 12 yrs. We have been fortunate that for most of his life, he has been relatively healthy. but these last few years, it is...
  • deleted_user

    Tough times

    3
    Hi Everyone, I found this site tonight while looking for CF support groups. My son, nearly two years old now, was diagnosed with CF shortly after birth. We have been blessed so far with good health, his problem has been with his weight. At almost two years, he is still in the second percentile for his age in height and weight. I have been looking for a support group for a while now, and while i...
  • deleted_user

    sinus issues

    1
    Our 13 year old has horrible has ongoing sinus infections. She has had sinus surgery and is now on IV antibiotics for the most recent sinus infection. Does anyone have any suggestions on chronic sinus treatment? What has and has not worked? Thank you!!!
  • Is pulmonary MRSA a significant problem for CFers? Share your thoughts?
  • deleted_user

    Atypical CF

    3
    Does anyone have knowledge of this?Im 38 and when undergoing gentic testing I found out I was a carrier. However, the nurse took note I have had chronic pancreatis for years. She suggested I get tested further as she strongly believe I had atypical CF. Apparently chronic panc is a symptom.
  • Okay, I made this account a loong time ago but never really got involved and I am starting to need more support emotionally than just my friends telling me "Everything will be alright." I know they mean well but I just feel like they don't really understand. I have been in a serious relationship with someone who has CF for about two years now. He is my best friend and my rock. But since about...
  • deleted_user

    Would really appreciate advice

    1
    Hi EveryoneMy name is Emma. I'm a postgraduate student studying Scriptwriting.I am planning on writing a drama about a couple in their late teens having to come to terms with the male being diagnosed with CF later than normal.I'd therefore love to hear from people who have experienced this themselves or know people that have.i'd like to make the script as true to real life as possible.I'd like to...
  • deleted_user

    Vest

    1
    I have 2 nieces facing CF one is 6 months other 2 and 8 months. They live in country were doctors do not know about condition much.Please advise me on vest and when is best time to start using?are the used ones good enough? all you could possible tell me pls tell also add me as your friend. I'm just worried aunty who loves this 2 girls so so much
  • Today the Cystic Fibrosis News Network (CFNN) released a special report focusing on a new Phase 2 clinical trial for CF patients with persistent MRSA lung infection. The trial, which is designed to introduce the first inhaled antibiotic to treat this type of infection, is currently enrolling patients across the country. In this special report, Dr. Elliott Dasenbrook (principal investigator)...