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.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
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.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
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.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
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.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
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.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
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.
My exercise routine has gone through quite an evolution from college to motherhood and life on the transplant list.
September 15, 2015
Paddling Hard in the Right Direction
The Pre-wait Waiting Game
In March 2015 I finally heard the words that I had been waiting 18 months to hear: “We would like to activate you on the waiting list for a double
lung transplant.” Music to my ears, and my old tired worn-out CF lungs. I'm 39 years old now and it's time for that Hail Mary pass, if I am so blessed to receive it, as all the CF treatments in the world have been exhausted on my worn out body.
As a child growing up with three siblings, I did all the things that other children of the '80s were doing. We rode our bikes past dusk, went rollerblading around town and built a skateboard half-pipe in our backyard. We played roller hockey in the street, basketball at the high school, ran the track just to see how fast our skinny knobby knees could run a mile, swam at the local pool, and of course, played in our own backyard. During grade school, I also played recreational soccer, which I took a long hiatus from but came back to in college.
I spent nights at college running from league to league, playing up to three games in one evening. I would often finish a roller hockey game, then skate to soccer and then hike to the pool.
I had finally awakened my competitive spirit. My college years were the most active years of my life.
After graduation, I started working full time. I found a workout partner and we took our lunch breaks at PE classes at the local community college. During winter months, we signed up for yoga and weightlifting after work. I also played in an adult indoor soccer league. By the time I got married at 25, I felt like I was in the best shape of my life; but I had to work extra hard at it. My CF lungs were getting more diseased and my FEV1 slowly dipped year by year, no matter my compliance or exercise regimen.
When I was 28 years old, taking care of my infant twins became my life. I had to give up rigorous exercise. My idea of exercising was walking around the block, pushing a double stroller.
When the twins were 5 years old, in 2009, I decided to take up running. I was running nine miles a week to get ready for my 5K race in October 2010. I ran with an oxygen tank strapped to my back cranked up to five liters per minute. I finished the 5K in less than 50 minutes. My legs felt stronger, but my FEV1 was still declining. I decided running was not for me after a 12 month trial.
Over the last four years, I have become very sedentary. I used to bike to drop off the twins at a variety of local after-school activities, but eventually I started driving them to said activities. As my health declined, I focused on raising my twins and keeping up with the daily regimen of CF treatments. In the winter of 2015, when I was being considered for lung transplantation, the team asked me to start exercising again. This seemed daunting as I was chained to oxygen 24/7, but I agreed.
As my CF has progressed, I've begun to view my exercise revolution from college as just a part of my exercise evolution of life.
Today, my exercise goals are very different than those of my college days. I commit to walking half a mile around the block. I have also added squats to my routine. It's very important to have strong legs and a strong core before transplant because you cannot use your arms for stabilization due to the placement of the surgery site.
When I think about exercise
post-transplant, I am ecstatic. I can't wait to hit the gym. I am looking forward to exercising like a beast and turning my limp extremities into lean mean muscle machines. But most of all, I can't wait to dance, play soccer, swim and keep up with my 10-year-old twins.
Adult with CF
Tara lives in California with her family and received a double-lung transplant on January 1, 2016. She attributes her successful recovery to the abiding support of her husband, mother, two sisters, brother and in-laws, who live nearby.
November 2017 -- We were deeply saddened to learn of Tara's passing. Tara opened her heart to the CF community through our blog. She will be missed by many.
Share this Post
This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
Follow Us On
With more than 70 chapters and offices across the country, it’s easy to find and join a local Cystic Fibrosis Foundation chapter near you.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails