Search results for Cystic fibrosis

Cystic Fibrosis and Gastroschisis

  • By AuntyJessie11 · Posted December 10, 2011
  • Journal entry · 4 replies
  • My necie has Gastroscisis and she was doing ok. She was born on the 11 of November, we have also just been told that she has Cystic Fibrosis. We can't get straight answers about anything, has this happened ...

Could this cystic fibrosis breakthrough help people with sarcoidosis?

  • By Ned-Vroom · Posted April 7, 2012
  • Discussion in Stop Sarcoidosis · 8 replies
  • The story I have linked to below seems to offer hope for people with cystic fibrosis. But it also mentions that the technique may also help people with other lung conditions, though sarcoidosis is not ...

Cystic Fibrosis?

  • By tinymiracle · Posted December 6, 2010
  • Discussion in Preemie · 13 replies
  • Tomorrow we take our LO into the hospital to get tested for Cystic Fibrosis. She has a lot of the red flags. She has even dropped a whole pound while on nightime NG feedings. My husband and I are so worried ...

Does anyone else's baby have cystic fibrosis?

  • By JohnIIImom · Posted February 26, 2012
  • Discussion in Preemie · 4 replies
  • I don't know anyone else with a similar story to mine. My son's intestines perforated in utero so he had a bowel resect and an iliostomy the day he was born. A week later, tests revealed cystic fibrosis ...

Cystic Fibrosis and Sarc

  • By smurph · Posted September 17, 2007
  • Discussion in Stop Sarcoidosis · 1 reply
  • I have 3 first cousin that have Cystic Fibrosis. I understand the genetics how how they got the disease but it seems too much of a coincidence that I would also be afflicted with a pulmonary disease ...

Meconium & Cystic Fibrosis

  • By kamnksmama · Posted September 2, 2010
  • Discussion in Preemie · 2 replies
  • My daughter was born at 27 weeks and she is now 5 weeks old. The Dr. gave her some chemical that will show up on an x-ray to show the movement in her digestional tract. The chemical also cleans out her ...

Cystic Fibrosis

  • By quiact · Posted February 25, 2009
  • Journal entry · 0 replies
  • An Autosomal Recessive Genetic Disorder: Cystic Fibrosis Cystic fibrosis (CF) is known as what is called an autosomal recessive genetic disorder. With cystic fibrosis, each of your parents contributed ...

Need Education - My husband has CBAVD

  • By J-Fisher · Posted February 2, 2009
  • Journal entry · 9 replies
  • Hi All, I'm completely new to this infertility world. This is how my story reads: My husband and I have been together for 8 years and married for a little over 2. We have not been using any form of BC ...

Can anyone help with statistics, please?!?!

  • By Katherine27 · Posted December 9, 2010
  • Discussion in Neurofibromatosis Network · 14 replies
  • I have a doctor appointment tomorrow (for myself) and I need some help! The last time I went, I mentioned that my daughter had NF1 and the midwife asked, "What's that?" I was a tad bit shocked since Neurofibromatosis ...


  • By NancyAE · Posted January 17, 2014
  • Journal entry · 10 replies
  • My doctor is always telling me to live as stress-free a life as possible. She believes that it will help in my fight against cancer. I find myself laughing when she says this. As the (now) single parent ...

My son can cry for an hour nonstop

  • By yvettenkids · Posted June 27, 2009
  • Discussion in Pregnancy & Parenting · 18 replies
  • My son was born March 25 of this year and has always had such horrible gas, you would think he filled his diaper each time. He cries for an hour or more at a time and nothing will sooth him. I have tried ...

cystic fibrosis question

  • By Pennydog · Posted July 29, 2012
  • Discussion in Stop Sarcoidosis · 2 replies
  • Hi, I am a member of Inspire and active on the board in the Autoimmune area. I don't know exactly where to ask this question but thought I might try here. My daughter's best friend has cf and is 17. She ...


  • By scorchdaj82 · Posted June 4, 2013
  • Discussion in Preemie · 33 replies
  • Hello I just was let know that my five month old preemie daughter she is is almost four adjusted she is not gaining weight eats goodsmart meets milestone always laughs and smiles they are doing tons of ...

Reverse Fibrosis

  • By okie2 · Posted September 1, 2013
  • Discussion in Pulmonary Fibrosis Foundation Patients · 4 replies
  • either educate your doctor or find a new one please print this and take to your doctor Use Enzymes for Fibrosis, Scars, Keloids, Lung Disease and Cancer by Tony Isaacs A primary benefit of natural enzymes ...

Pulmonary Fibrosis with Atelectasis?

  • By JOLICARY · Posted February 23, 2013
  • Journal entry · 7 replies
  • Is it common to have atelectasis with pulmonary fibrosis ...


  • By Zacolton · Posted May 26, 2008
  • Journal entry · 15 replies
  • My latest post is on loneliness in relation to disease. I'm wondering how others feel about this? For the first time in a long while I am feeling homesick. I miss my ...

Now we know why.

  • By Dawnrae · Posted October 2, 2011
  • Journal entry · 9 replies
  • We finally went to see the urologist and now we know why we have not gotten pregnant. My husband is missing the tubes that carry the sperm out. This means that he is most likely a carrier of the cystic ...

Life threatening breathing problems-not due to cancer growth though! :(

  • By HopeandFaithMaria · Posted February 24, 2009
  • Discussion in Lung Cancer Survivors · 13 replies
  • My father was diagnosed last year with 3b non-small cell lung cancer on both sides of his lungs and on his lymph nodes. The cancer seemed gone for a few months after treatment, only to come back 3 months ...

Living undiagnosed

  • By ellie1414 · Posted February 15, 2010
  • Discussion in Genetic Alliance · 16 replies
  • I am 14. I am living undiagnosed. I have been stuggling with medical issues since I was a baby. I have a dilated aorta, cutis marmorata, hypothyroidism, scoliosis, chiari malformation, Barrett's Esophagus ...

FDA Approves Cystic Fibrosis Drug

  • By Rx · Posted January 31, 2012
  • Discussion in Cystic Fibrosis · 0 replies
  • The novel drug ivacaftor (Kalydeco), formerly known as VX-770, has been approved for treating cystic fibrosis arising from the G551D-CFTR mutation, the FDA said Tuesday. The drug is the first approved ...

Natural Halotherapy treatment

  • By maxmakc2 · Posted January 16, 2011
  • Discussion in Scleroderma Foundation · 7 replies
  • Thousands of 'salt rooms' have been turning up all over Eastern Europe and Russia over the past decade or so, and they've done quite well at treating respiratory illnesses naturally. The latest in the ...


katharine1948 (Inactive)
  • By katharine1948 (Inactive) · Posted September 12, 2013
  • Discussion in Pulmonary Fibrosis Foundation Patients · 39 replies
  • tHERE was a study done in India . It has come to the attention of the usa scientist . Its under federal funding. this curcumin comes from turmerc. its extracted . there is a break through . first of all ...

Lung Fibrosis and coughing

  • By molly2004 · Posted November 21, 2011
  • Discussion in Scleroderma Foundation · 21 replies
  • Does anyone else out there cough everyday? I have at least one or two coughing fits a day lasting approx. 20 to 30 minutes. It is caused by SD related lung fibrosis. It makes me mad, sad, and I feel isolated ...

Cystic Fibrosis and Medical Disability

  • By laceymarielbk · Posted June 25, 2007
  • Discussion in Health News · 2 replies
  • Hello, My best friend is 33 years old and has cystic fibrosis. She was recently hospitalized again for a lung infection. Her lung function was down to 33%. She was told by her doctor that she needs to ...

cystic fibrosis

  • By Dina4 · Posted September 16, 2007
  • Discussion in Health News · 1 reply
  • I have cystic fibrosis I was diagnosed when I was six ...

cystic fibrosis

  • By boogieboo · Posted September 21, 2007
  • Discussion in Health News · 0 replies
  • hello all i am 29 years old and i have a 5 year old son who has cystic fibrosis i would love to talk with those who suffer from this disease and also educate those whom do not know about it ...

Urgent- Ever dealt with very severe breathing problems?

  • By HopeandFaithMaria · Posted February 24, 2009
  • Discussion in Lung Cancer Survivors · 9 replies
  • My father was diagnosed last year with 3b non-small cell lung cancer on both sides of his lungs and on his lymph nodes. The cancer seemed gone for a few months after treatment, only to come back 3 months ...

cystic fibrosis

  • By imamann · Posted January 11, 2010
  • Discussion in Neurofibromatosis Network · 1 reply
  • Hey I have a friend from high school who has cystic fibrosis. He has started a page on facebook called "365 breaths". If you know anyone with cf join the group, or pass it on to people ...

Positive Cystic Fibrosis

  • By tinymiracle · Posted December 20, 2010
  • Discussion in Preemie · 7 replies
  • My Lo (8 months---4.5 adjusted) has tested positive on two different sweat tests for Cystic Fibrosis. We are heading to the CF clinic in the morning to discuss matters at hand, get genetic blood test ...

Originial Cystic Fibrosis post

  • By tinymiracle · Posted January 15, 2011
  • Discussion in Preemie · 2 replies
  • I had posted a need for some prayers for my LO who was just diagnosed with Cystic Fibrosis right before Christmas. I just wanted to let the three ladies that had written me something know that I read ...

Using Invitro to Start a family

  • By caallen · Posted September 20, 2011
  • Discussion in Cystic Fibrosis · 4 replies
  • Hello, My husband has Cystic Fibrosis and we are at the beginning stages of using InVitro Fertilization to start our family :). I was wondering if there were any other members going through the similar ...

cystic fibrosis

  • By DipsyMeatball · Posted March 18, 2013
  • Discussion in Cystic Fibrosis · 0 replies
  • my child has cystic fibrosis. any tips to help me raise her? i just want her to be a normal child and grow up to live a normal life ...

Silent mutation VEDS

  • By worriedsick1 · Posted January 21, 2014
  • Discussion in Ehlers-Danlos National Foundation · 15 replies
  • Hello everyone! I am a fellow EDSer and was recently tested for VEDS. I received results from the lab that showed I have a mutation in the COL3a gene, however the mutation is silent, meaning that the ...

Cystic Fibrosis carrier and Sarcoid?

  • By Grapecooper · Posted February 7, 2014
  • Discussion in Stop Sarcoidosis · 9 replies
  • Hi all, I'm just wondering how many out there also have this connection. I got my 23andme genetics health information via Promethease. It showed that I'm a CF carrier Nd had 8 markers of Sarcoid. Who ...

Well, here I go again!

  • By angelwings · Posted October 26, 2013
  • Discussion in Pulmonary Fibrosis Foundation Patients · 49 replies
  • Why doesn't some organization, perhaps like PFF..... do a documentary or something of the kind for PEOPLE that have Pulmonary Fibrosis. I just watched a very moving documentary (Blackfish) on CNN last ...


  • By jennifermb21 · Posted March 28, 2013
  • Journal entry · 30 replies
  • So I finally visited the pulmonary specialist yesturday. He diagnosed me with mixed connective tissue disease, pulmonary fibrosis,scleroderma and raynauds phenimenon. According to chext xrays I had done ...

Lung transplant with feeding tube

  • By murphy40 · Posted December 17, 2010
  • Discussion in Scleroderma Foundation · 17 replies
  • Hello everyone, I was diagnosed with systemic scleroderma this past spring. My lungs have been severely damaged by the fibrosis caused by the scleroderma. I am on 24/7 O2 and to make a long story short ...

I Feel Like a Forgotten, Second Class Citizen.

  • By alphajim1 · Posted August 15, 2012
  • Discussion in Pulmonary Fibrosis Foundation Patients · 30 replies
  • I Feel Like a Forgotten, Second Class Citizen. I feel like a forgotten, second class citizen. I just don’t know how to describe it accurately. I am sad. I am hurt… and sometimes angry. I am J. Doe and ...

Left Lung Fibrosis Help

BettysLife (Inactive)
  • By BettysLife (Inactive) · Posted March 10, 2012
  • Discussion in Lung Cancer Survivors · 9 replies
  • Hi All. You can check my profile for my history. Today i wokeup with a fever of 101.8 and coughed up a large amount of blood 3 times. I went to my family doctor today who did a strap test that was clear ...

Inversion Therapy


Idiopathic Pulmonary Fibrosis

  • By strong · Posted August 15, 2013
  • Discussion in Pulmonary Fibrosis Foundation Patients · 0 replies
  • Idiopathic Pulmonary Fibrosis (IPF) is a disease characterized by progressive scarring, or fibrosis, of the lungs. It is a specific type of interstitial lung disease in which the small air sacs of the ...

Another Clinical Trial Ended Early

  • By jrosto · Posted October 28, 2013
  • Discussion in Pulmonary Fibrosis Foundation Patients · 9 replies
  • Another one for the "Well this won't work, what's next?" file. "A large phase III randomized trial testing Ambrisentan (Letairis) for early idiopathic pulmonary fibrosis was stopped early after an interim ...

CF testing or Not

  • By Koltsmom · Posted November 16, 2010
  • Discussion in Preemie · 5 replies
  • Ok you can read the issues that my son is having about his weight and eating habits. He has also had a constant cough for like 3 weeks now....No running nose or anything else with it just coughing. To ...

new book "Survival of the Sickest"

  • By SCCatman · Posted April 14, 2007
  • Discussion in TalkPsoriasis · 18 replies
  • ** Originally posted by SCCatman ** Last year I wrote about a book "Genome the Autobiography of a species in 23 chapters" by Matt Ridley. A great book on genetics and the history of humans. One fact he ...

Poly Cystic Liver Disease

  • By jamee · Posted May 28, 2011
  • Discussion in American Liver Foundation · 3 replies
  • Hi everyone, I thought I would start a discussion on Poly cystic liver disease and see who else has been diagnosed with this? I have had it a while and have had a cyst drained a couple of times and then ...

3 yr old FTT milk intolerance? cycstic fibrosis?

  • By peace_nhope · Posted March 13, 2012
  • Discussion in Preemie · 4 replies
  • My son is a 25 weeker born 1 lb, 13 ounces, he is now 3 yrs old. Severe reflux since birth confirmed by endoscopy last November (and MONTHS, ok YEARS of midnight vomitting but I digress). He takes zegerid ...

Open Discussion on Lung Transplants

  • By DennisV · Posted May 14, 2012
  • Discussion in Pulmonary Fibrosis Foundation Patients · 63 replies
  • Hi Guys, I found this page blank. So it’s time to open it up for discussion. I had a single lung Transplant on Dec 24th 2005 at UAB in Birmingham Alabama. If anyone is thinking about a Lung Transplant ...

The day I thought I would never see

  • By DahliaAutumn · Posted April 1, 2012
  • Journal entry · 15 replies
  • The day has finally come. The thing I have feared for the past few years. The thing I have cried desperately for help in silence. I can no longer eat. My body has completely rejected all foods. I am drinking ...

Test .. Test .. Frustration .. Repeat!

  • By edwardnorton · Posted July 23, 2012
  • Journal entry · 0 replies
  • It's been nearly 3 weeks since my GJ tube put in and all of a sudden one of the nurses that work for my insurance company while doing our monthly phone conversations that she thinks the reason for my ...

Newborns with SCT do not get genetic counseling.

  • By SCT-Hall · Posted October 15, 2012
  • Journal entry · 0 replies
  • Sciencedaily 2012--->University of Michigan researchers found that 20 percent of physicians reported their patients with newborns carrying the sickle cell trait did not get any genetic counseling. In ...

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