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.
On National Sisters Day, twin sisters with cystic fibrosis share their special bond and hope that all people with CF can find that special “person” in their lives.
July 31, 2020
Answering Questions on School Reopening and CF
Choosing My Health Over My Livelihood
Melissa Jones: Sometimes you don't even realize you had your “person” all along. I would say this was the case with my twin sister and me. We lovingly refer to each other as “twinnies.” Being a support to each other has taken on different
roles and intensity over the years, but one thing is constant: She has my back and I have hers!
Although we were not diagnosed right away, we started our cystic fibrosis journey together right from the start. Our mom didn't know she was having twins until one week before she gave birth to
us! She was feeling “extra pregnant” and requested an ultrasound to check on things. And surprise! Twinnies! My twinnie had been playing a lil' game of hide and seek all that time. We arrived six weeks early in March 1981. I was born and my twin needed
to come out by cesarean section, so we ended up being born 20 minutes apart -- a bonus baby that arrived with a lot of action!
We each weighed about 4 pounds -- a little less than a sack of flour. Our mom recalls spending her time in the newborn ICU, holding and loving on her little twinnies and said despite our early arrival and being tiny and jaundiced that we were both strong.
After only 10 days in the hospital, we were healthy enough to go home. Yay!
In the next few years, we kept our parents on their toes, taking turns being sick. We had a lot of gastrointestinal troubles and pneumonia. We were not thriving or growing well. We were not even on the growth charts at all for many years. Our parents were doing everything they could to get to the bottom of what was happening with their twinnies.
We were finally diagnosed with CF at age 4. Our parents felt a feeling of devastation yet relief at the same time -- devastated by the thought of their daughters having CF, but relieved to know what was ailing us so that they could take action. Our parents
were each other's person for love, support, understanding and relied on each other to take care of their family. We have memories seeing them crying deeply together, laughing together, and being frustrated together. When our little brother, Andy,
was diagnosed with Type 1 diabetes at age 10, the feeling of devastation and relief was like pressing repeat on a song for them. But, they were again ready to spring into action and drew strength from one another.
Because of their own bond, our dad and mom set us up to basically take charge of our CF and to be each other's person. Being young and having a lot to learn, we did not fully appreciate or realize the impact of being a support to one another. We just
did it not even realizing that's what we were doing.
Our parents integrated our treatments and needs until it felt as normal as breathing. Helping each other through our airway clearance techniques seemed normal to us. We each had big bears -- mine was
brown and Sue's was black -- and we lay on these bears while we clapped each other on the back for airway clearance. We went to all our doctors' appointments together. Our unique CF life was our “normal” together.
We also grew up with our own individual difficulties with CF, and we learned to support one another in ways that, perhaps, we did not need ourselves. Fast forward many years later, it was when we started “adulting” that we had our “aha!” moment of how
important it is to realize and appreciate who your person is.
I realized it when we were 20 years old in 2001 when my twinnie had her first adult CF hospital stay. It felt a lot different than having a hospital stay when we were kids and our parents handled all the technical stuff and were with us each step of the
way. Sue lived in Colorado and I lived in Arizona at this time. I felt a strong inner urge to be there with her, so my husband and I drove 15 hours to get there. Of course, I felt like I couldn't do much, but just being close by her made me feel better.
Remember that time, twinnie?
Susan Dowling: Oh yes, I remember. I felt so cared for with you both putting forth such efforts during a time I so needed to feel that connection and support. That visit was really special. Remember when I was discharged and we walked
around the local zoo together? It was such a normal thing to partake in.
One thing we've always helped each other with is supporting as “normal” a life as possible, rising up from the lows CF can bring and blazing forward. My heart caught up to the realization that you were my person -- literally the other half of my heart
-- when we shared some major triumphs in 2017.
Having suffered the tragic and abrupt end of my marriage and life as I knew it, I retreated to what I realized is my safe place -- my twin! Remember when we took to the coastal scene on bikes?
That epic 40-mile ride? That ridiculous steep hill we both pedaled up with no stopping? (I was so deeply proud of us -- and of you -- that we crushed such a challenge together.) Riding to your favorite local food shops? Do you remember
when I let down my guard and allowed myself to be vulnerable and cried on your shoulder at the neighbor's beautiful garden?
It was then, in the wake of severe heartbreak, that I realized you were, are, and always will be my person.
When you have your person, you can feel and be everything to each other. Your special person helps you to not feel alone. They cheer you on through your good days and bad. They want to give you that extra boost to keep on trying. Once we realized
we were each other's person, we embraced it. We can tell each other the silliest, most serious, or downright absurd things about our CF. Having your person means you can get a lil' annoyed when they give you the tough love, when they see you not taking
good care of yourself because you are too busy with other things. But usually that annoyance turns to gratitude that they speak up because they feel that close to you and know what you need even when you don't want to admit it. We also seem to have
our not-so-good days opposite to one another; this allows us to take care of each other even better.
Having your person isn't limited by miles. We live 1,483 miles apart yet show our together-ness in so many ways. Our hope for our CF community is that you too find your person ... maybe it is a family member, spouse, bestie, or a CF friend through the
amazing virtual means available today. Maybe your person has been there the entire time and you just didn't realize it -- like my twinnie and me. We are grateful to have realized this at a time when we appreciate and need each other the most. We are
convinced part of our success in coping and thriving with CF is having each other, and we are ever grateful to be twinnies. Your person may or may not have CF, but one thing they will always have is your back.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Susan is a 39-year-old who shares CF triumphs and trials with her twin sister, Melissa. She is most rewarded soulfully when doing for others and making a positive impact, if even for just one person’s day. Susan has volunteered in the CF community for a number of CF fundraisers and for the Rocky Mountain chapter of the Cystic Fibrosis Foundation. An “omni-verted extrovert,” Susan thrives on opportunities for adventures, making connections, and challenging her physical limits, while cherishing solo time to reflect and recharge. Susan is currently living it up in the Pacific Northwest with her rescue pup.
Melissa happily lives in southeastern Arizona on her “prairie” with her wonderful husband of nearly 20 years. She gave up a career-oriented lifestyle to focus on the joys of giving. Melissa enjoys helping people learn the encouraging truths in the Bible. She loves kids and volunteers with Make A Wish, helping to grant the wishes of critically sick kids. For fun she enjoys hiking, is a “crazy chicken lady,” and loves cooking for friends. Her contagious laughter is her super power. She is thankful to the Cystic Fibrosis Foundation for continually helping her and her twin sister, Susan, live their best lives.
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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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