Cystic Fibrosis
You need to see yourself as a normal person. CF is just something that you have to deal with everyday - not something that controls the direction of your life - Colleen, Live Love Laugh Breathe Blog
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The Ten Things That Make My (CF) Life Easier
This idea actually spun off from me thinking about how thankful I am for different things in my life. I then got to thinking about how much easier my (CF) life is because of certain things I've either bought, inherited, or stumbled upon. Here is the top ten, actually 16, and why I think they make my life better.
16. Good Veins- Having hoses running through my arms has given me the privilege of avoiding multiple sticks most of my life (except this time). I'm not sure if it's something I've done, or just inherited, but I do know that they have made my CF experience more enjoyable. I've had 30+ PICC lines though so who knows how much more they can take.
15. Foot Orthotics-…
Resources
Cystic fibrosis advocates are worried about the upcoming film “Five Feet Apart”
The film’s title comes from the “six foot rule,” a guideline set by the Cystic Fibrosis Foundation that says two patients must be kept at a minimum of six feet (two meters) apart to minimize the risk of cross infection.
Discovering the ancient origin of cystic fibrosis, the most common genetic disease in Caucasians
Imagine the thrill of discovery when more than 10 years of research on the origin of a common genetic disease, cystic fibrosis (CF), results in tracing it to a group of distinct but mysterious Europeans who lived about 5,000 years ago. CF is the most common, potentially lethal, inherited disease among Caucasians – about one in 40 carry the so-called F508del mutation. Typically only beneficial mutations, which provide a survival advantage, spread widely through a population.
Newly Discovered Cell Type May Fuel Cystic Fibrosis
The surprising insight could provide foundation for future cure.
Patient Voices: Cystic Fibrosis
Cystic fibrosis is a progressive genetic disease that causes persistent lung infections. It limits the ability to breathe and the ability to break down food and absorb vital nutrients. Less than 20 years ago the median life span for people with cystic fibrosis was 29. Today, with new treatments and earlier diagnosis, those with the inherited disorder are living longer, more fulfilling lives. But with complicated, time-consuming treatments and frequent lung infections, life with cystic fibrosis can be difficult. Five men and women speak about their experiences.
Stephen Hawking’s Disability Activism Was as Invaluable as His Science
For many people with disabilities, Hawking’s example was invaluable—a source of empowerment and reassurance as well as a means of pushing back against ableist prejudices. Elsie Tellier, a young academic with cystic fibrosis, credited Hawking with paving the way for her and others; in the words of her Harvard classmate Simon Sun, “his life showed that there is so much more than ability. For an 8 y.o. who just had all physical function stripped away, this was everything.”
The Reality Of Living With Cystic Fibrosis
Emily Kramer-Golinkoff, co-founder of Emily's Entourage, joins Ricky to discuss what it's really like to live with cystic fibrosis.
What It’s Like to Get a Double Lung Transplant in Your 20s
Cystic fibrosis is an invisible illness. We can look really good on the outside, but on the inside, we’re dying. We can have a really good day and be able to do a whole bunch of stuff, but the next day, we can be bedridden.
I have CF, but it will never have me!
This is a blog that Andy has written to describe his battle with cystic fibrosis and other physical and emotional issues. Andy is 38 years old and battles emotional and physical issues every day with the help of his beautiful wife Andrea and his two miracle children, Avery and Ethan.
Beating Cystic Fibrosis
In the 1970s, most children with CF never made it through elementary school. Today the median life expectancy for the 30,000 Americans living with cystic fibrosis is closing in on 40, and expected to increase.
Cystic Fibrosis and Your Baby
All babies have newborn screening tests for CF. Newborn screening checks for serious but rare and mostly treatable conditions at birth. It includes blood, hearing and heart screening. With newborn screening, CF can be found and treated early.
Cystic Fibrosis Blogroll
Do you have cystic fibrosis (or a child or spouse with CF) and a blog? Add it to the CF Blogroll!
Cystic Fibrosis improved with gene therapy for first time
Gene therapy has been shown to have a "significant" but "modest benefit" for cystic fibrosis sufferers for the first time. The root cause of the genetic lung disorder -- which affects more than 10,000 people in the UK -- was discovered in 1989 at the site of chromosome 7.
Cystic Fibrosis Might Be 2 Diseases
The sister disease affects the pancreas and other organs, while leaving the lungs alone
Cystic-Fibrosis Patients in Canada Live a Decade Longer Than U.S. Patients, Study Says
Differences in health-care systems and lung-transplant rate may be among the factors, researchers say.
Explainer: what is cystic fibrosis and how is it treated?
This gene defect means the protein it produces, also called CFTR, is absent or does not function correctly. This disturbs the salt balance in most tubes within the body, including in the airways, gut and the reproductive system.
Is Vertex's New CF Drug Unprecedented? Incremental? Expensive? Maybe All Three
Vertex’s efforts in cystic fibrosis have been an attempt to extend a breakthrough. Kalydeco, approved in 2012, increases FEV1 by 10% in patients whose CF is caused by a mutation called g551d. That’s a big increase in lung function. But only 5% of the 70,000 people with CF worldwide have this mutation.
Jennifer’s Story: A Life of Beauty and Loss in Facing Cystic Fibrosis
Cystic Fibrosis, like other genetic diseases, inhabits a unique place in nature for the evil it creates. In the novel The Brothers Karamazov, Dostoevsky speaks to man’s singular capacity for “creative” evil; however, in his writing, Dostoevsky neglects the insidious evil of nature, which enabled Cystic Fibrosis to slowly deteriorate my sister’s lungs through years of struggling for her health.
My Mother, My Disease, and Me
Doctors told me cystic fibrosis would kill me by age 15. My mom told me I just had allergies. After a childhood of Ayurvedic treatments, I've embraced Western medicine as an adult, without abandoning my alternative roots.
The Microbial Economics of Cheating in Cystic Fibrosis
A bacterium in Cystic Fibrosis patients appears to cheat on its counterparts.
The Ten Things That Make My (CF) Life Easier
This idea actually spun off from me thinking about how thankful I am for different things in my life. I then got to thinking about how much easier my (CF) life is because of certain things I've either bought, inherited, or stumbled upon. Here is the top ten, actually 16, and why I think they make my life better.
Breathe Easy
My thoughts, photos, and opinions on Life with Cystic Fibrosis, Having a Double Lung Transplant and Everything in Between.
Cure4CF Foundation
Established in 2009, the Cure4CF Foundation is a registered not for profit charity with the primary goal of finding a cure for Cystic Fibrosis. Cure4CF itself does not conduct research but rather seeks to achieve its goal by raising and directing funds to promising avenues of research.
Cystic Fibrosis Lifestyle Foundation
The Cystic Fibrosis Lifestyle Foundation is about guiding the choices made to live successfully with CF. Through recreation grants and educational programs CFLF assists people living with CF to thrive, not just survive. By inspiring healthy and active lifestyles through fitness, exercise, and outdoor recreation activities the CFLF educates people living with Cystic Fibrosis about the critical psychological, social and emotional connections between their lifestyle and their health.
Cystic Fibrosis News
Cystic Fibrosis News is a digital news publication dedicated to offering comprehensive daily news coverage of CF.
Cystic Fibrosis Research, Inc
Cystic Fibrosis Research, Inc. exists to fund research, to provide educational and personal support, and to spread awareness of cystic fibrosis, a life-threatening genetic disease.
CysticLife
"CysticLife.org is a place where anyone affected by CF can come to be inspired, motivated and educated. The CysticLife community has become an online family; loving and supporting each other from all across the globe." - Ronnie Sharpe, Founder. CysticLife.org is funded by paid marketing projects, a generous angel investor, and out of the pockets of family, friends and founders. It truly is a labor of love.
Jamie Bug
On December 10,2007 just 3 days after being listed I received new lungs. I was given a miracle! God had a plan for me, God answered my prayers. It wasn't easy, but it is worth it!
Jerry Cahill
The common belief in this video is that compliance prolongs the life of anyone living with cystic fibrosis.
Live Love Laugh Breathe
I was also born with Cystic Fibrosis and this blog is to show how I am still able to Live, Laugh, Love & Breathe no matter what!
More Than DNA
Hi, I'm Cheriz and I have Cystic Fibrosis! This blog is about my life and how CF affects my daily life. I hope to offer support for others in the CF community.
So What Life
I’m Lauren and I’m thriving with cystic fibrosis, a chronic illness I was born with. From the day I was diagnosed at 3 years old, my mom and dad decided their girl wasn’t gonna live in a bubble. If my life would be short, at the very least, they would allow me to live my best life possible.
A Matter of Life and Breath
Life, Lung transplant, and Cystic Fibrosis. And Everything In Between.
Boomer Esiason Foundation
Team Boomer is a program that: encourages people with cystic fibrosis to incorporate exercise into their everyday lives; provides an avenue for individual athletes in a variety of sports to raise money for cystic fibrosis; and offers assistance to grassroots athletic events looking for a cause to support.
CF Europe
CFE fights for a better and longer life for all people with CF in Europe. We want to ensure that all CF patients have equal access to the best possible treatment now, to enable them to benefit from disease stopping therapies in the near future. By building stronger CF associations throughout Europe and collaborating with all stakeholders towards this goal, CFE works for better access to care and a better quality of life for every child and adult living with CF in Europe.
Confessions of a Cyster
I am a 35 year old living with Cystic Fibrosis. I have had my ups and downs, but try my best to live a normal life. For now I am just living each day to the fullest, trying to juggle it all. These are my ramblings...
Cystic Fibrosis Canada
Cystic Fibrosis Canada is one of the world’s top three charitable organizations committed to finding a cure for cystic fibrosis. Cystic Fibrosis Canada is an internationally-recognized leader in CF research, innovation, and clinical care.
Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for cystic fibrosis. We fund more CF research than any other organization, and nearly every CF drug available today was made possible because of Foundation support.
Cystic Fibrosis Scholarship Foundation
The mission of the Cystic Fibrosis Scholarship Foundation is to provide an opportunity for young adults with CF to further their education at a college or vocational school. This possibility is often out of reach for families with CF children because of the high cost of medical care from the time these students were babies.
Cystic Fibrosis Trust
We are the only UK-wide charity making a daily difference to the lives of people with cystic fibrosis, and those who care for them.
CysticFibrosis
CysticFibrosis.com is a social health community, founded in 1996 at the dawn of the Internet and the rise of the e-patient – the electronic or empowered patient. We are a source of information, hope, and encouragement for patients and families affected by CF.
European Cystic Fibrosis Society
The European Cystic Fibrosis Society aims to achieve the best possible treatment and the highest quality of life for the patient with cystic fibrosis by the development and distribution of knowledge in the field of cystic fibrosis.
North American Cystic Fibrosis Conference
The NACFC serves as a collaborative forum to advance research for the treatment and cure of CF, and is an ideal opportunity to receive state-of-the-art continuing medical education and learn about the latest products and services in CF care.
Not So Bright & Shiny
Life has been twisted and turned upside down. As a mother, I had both the wonderful privilege of holding my sweet son as I brought him into this world…and the horrible chore of holding him as he took his last breaths and left this world, at only 7 years old. June 24, 2010 he earned his angel wings...
One Breath at a Time - Living with Cystic Fibrosis
I saw that blogging was a way that many of them were sharing what was going on in their lives. So I started this blog. I found that it was a great way to get things off my chest. More than anything else, it has been a way for me to raise awareness too, and that has been the biggest blessing I could have asked for. I have people reading my blog and learning about what Cystic Fibrosis is. I couldn't ask for more than that.
Run, Sickboy, Run
Blessed with Cystic Fibrosis and a positive attitude, it is my duty and passion to show the cystic fibrosis community that anything is possible through this blog that discusses the daily trials and triumphs that accompany not only life, but a CF life.
RunSickboyRun.com
Blessed with Cystic Fibrosis and a positive attitude, it is my duty and passion to show the cystic fibrosis community that anything is possible through this blog that discusses the daily trials and triumphs that accompany not only life, but a CF life.
American Lung Association
Cystic Fibrosis is an inherited disease that causes thick, sticky mucus to form in the lungs, pancreas and other organs. In the lungs, this mucus blocks the airways, causing lung damage and making it hard to breathe. In the pancreas, it clogs the pathways leading to the digestive system, interfering with proper digestion.
Confessions Of a CF Husband
My name is Nathan. My wife, Tricia has Cystic Fibrosis and had been preparing for a double lung transplant until we discovered we were pregnant. Surviving a premature birth, double lung transplant and lymphoma is just the beginning of our story.
Genetics Home Reference
Cystic fibrosis is an inherited disease characterized by the buildup of thick, sticky mucus that can damage many of the body's organs. The disorder's most common signs and symptoms include progressive damage to the respiratory system and chronic digestive system problems. The features of the disorder and their severity varies among affected individuals.
Lab Tests Online
Lab Tests Online has been designed to help you better understand the many clinical lab tests that are part of routine care as well as diagnosis and treatment of a broad range of conditions and diseases.
Medical News Today
The latest Cystic Fibrosis News articles published daily. Includes news on Cystic Fibrosis or Mucoviscidosis - a life-threatening inherited genetic disease. Includes current research, treatment, symptoms and screening programs.
National Heart, Lung and Blood Institute
The symptoms and severity of CF vary. If you or your child has the disease, you may have serious lung and digestive problems. If the disease is mild, symptoms may not show up until the teen or adult years.
ScienceDaily
Cystic fibrosis (CF), also called mucoviscidosis, is an autosomal, recessive, hereditary disease of the exocrine glands. It affects the lungs, sweat glands and the digestive system, causing chronic respiratory and digestive problems.
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