Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
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Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
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People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
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As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
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CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
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The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
Gastrointestinal issues cause serious health and quality-of-life problems for people with cystic fibrosis. That's why it was good to learn about the GI-focused research and care being done.
October 23, 2020
Pursuing My Goal to be a Pharmacist After Transplant
Plenary 2: Studying the Impact of Trikafta
Plenary 3 entitled, Advancing the GI Frontier, was presented by Dr. Steven D. Freedman MD, PhD, a professor of medicine at Harvard University and a world-renowned expert in cystic fibrosis gastrointestinal disease, and came complete with a Star Trek theme
with little starship Enterprises that moved along with the slides. Space was the final frontier in Star Trek. And although a cure is the final frontier in CF, GI care is a frontier we haven't yet conquered.
Watch the full plenary on Facebook Live.
So why am I qualified to talk about this plenary and GI in particular? Here are my bona fides: meconium ileus, bowel resection and reconstruction, pancreatic insufficiency,
feeding tube placement, gallbladder removal, two surgeries to prevent reflux, elevated liver enzymes, bowel obstructions, a GI bleed, abdominal
pain, struggle with weight, and probably a few other things.
As a child, I went to school terrified almost every day. Thoughts ran through my head regularly: How many times am I going to need to go to the bathroom? Why does my stomach rumble right when the classroom is quietest? Is today the day I'll have to miss
school or go home early because of severe abdominal pain? Only now, with 25 years of perspective, do I realize how GI issues dominated my CF experience at that time. I was short and skinny, self-conscious about my feeding tube, and generally just wanted to feel better.
Because of the progress we've made in the lung health of people with CF, we can begin to focus on GI issues. Just living with those symptoms is no longer good enough. GI issues can be maddening to deal with and I dealt with just about all of them as a
Needless to say, my pediatric GI doctors knew me quite well. However, I've never seen an adult gastroenterologist regularly. There just aren't enough CF-trained adult GI specialists to go around. A survey done by Community Voice showed that GI symptoms are very common and are a priority to those living with CF. Thankfully, Dr. Freedman, along with the wonderful Dr. Drucy Borowitz and others, came together to create DIGEST. DIGEST is a project to train GI specialists in CF GI care as they partner with dietitians as part of the multidisciplinary CF care team and improve research. Hopefully DIGEST will give us the new clinicians and research we need.
I won't bore you by rehashing the entire presentation -- best to hear it from Dr. Freedman himself. However, I would like to highlight a point in his talk that struck a chord with me. The risk of colon cancer in people with CF is greater than in the general population. There are likely three reasons for this: an altered GI microbiome, the high-fat CF diet, and CFTR is an anti-oncogene, meaning it tends to suppress cancer.
Colorectal guidelines now recommend that routine screening colonoscopies occur every five years beginning at age
40. I had my first colonoscopy about three years ago due to a GI bleed from long-term NSAID use. Despite all the horror stories and black humor, it wasn't that bad. The bowel prep isn't exactly fun, but it's a lot less painful and scary than colon
cancer. Even though I'm a few years away from 40, I plan to ask my care team about having another colonoscopy sooner. A more aggressive colonoscopy schedule might be warranted with my history.
The good news is that work is already being done to conquer the GI frontier.
GALAXY is an interesting study that seeks to develop a GI equivalent of FEV1. PROMISE is also studying Trikafta™ and its impact on the GI tract and the associated symptoms. GI disease markers are now coming into use for clinical trials.
Liver ultrasound studies have been undertaken to better diagnose CF liver disease and hopefully start treatment sooner. These are all great data points that suggest the future for GI treatment in CF is bright! To learn more, you can watch the full plenary
on Facebook Live.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Cade is a 36-year-old adult with cystic fibrosis from Muscle Shoals, Ala. He graduated from Birmingham-Southern College with a BS in biology. During college, he completed two semesters of CFTR research at the University of Alabama at Birmingham CF research center with Drs. JP Clancy and Steve Rowe. After graduating, Cade worked for a year part-time as an assistant to CF researcher Dr. Eric Sorscher. In addition, Cade has volunteered with the CF Foundation locally and nationally. He enjoys live music, photography, dogs, cheesy humor, and spending time with friends and family.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
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