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.
One year. My doctor gave me one year to try to get pregnant before treating me for my infections. Trying to get pregnant while still treating my CF the right way is one of the hardest battles we have had to fight.
August 6, 2019
Just Because I Can’t Work Doesn’t Mean I Am Lazy
We Can’t Always Carpe Diem
I'm pretty open and realistic when it comes to my illness. But, this is something I have kept largely to myself. I have been fighting some (many) serious infections in my lungs. And, the
two that are trying to overtake my lungs are types of nontuberculous mycobacteria (NTM).
I found out I had NTM in 2016. I did a year's worth of oral antibiotics and had my sputum tested monthly for a solid year before I was able to stop treatment. Now, keep in mind: there is no magical medicine that will get these germs out of my lungs. Once
you grow these infections, they stay for life. You just have to find a way to manage them.
A year later, and one infection turned into two infections and that's where I'm at right now. I'm growing two infections that are creating tinier and tinier infections. But, my lungs won't bow down that easily.
I have been monitored very closely by infectious disease doctors, my CF clinic, and every other health care professional in my life. After I finished treatment in 2016, my body needed a break from the antibiotics so that my lungs wouldn't become immune
to the only medication that helps. The bacteria aren't necessarily doing chronic damage to my lungs yet, so I was hesitant about starting additional treatment.
Then, after many discussions with all of my doctors, it was decided that if my husband and I wanted to have a child, that this is probably our only window. The thing about these antibiotics is they are not safe during your first trimester, however, they
are tolerable during the remaining trimesters. Oh, and the treatment lasts a year.
So, the doctor said he would follow my lungs closely for a year and -- during that time -- I could try to get pregnant and then we would re-evaluate.
With a heavy heart and my lungs weighing on my mind, I said without hesitation, “Yes, please give me that time.” In that moment I thought, 'pshh, a year?' So much can happen in a year. I had all the faith in the world that I could give my husband and
myself the future we wanted.
One year later, though, and no child. As I type this, I let those words sink in. They weigh on my heart more than you could imagine. Every time I'm out in public, I see someone who's pregnant. I see all my friends getting pregnant. I see cute baby clothes
everywhere and as much as it brings joys to my heart, I can't help but question if I'm deserving.
My mom and I just went to the infectious disease doctor for my one-year evaluation. The night before, I tossed and turned wondering what tomorrow's appointment would bring. My nerves were sky-high, but so was my faith.
The day came and I walked back into the X-ray room and got into the position I knew so well, chest against the machine. After I was done, I walked out, and the tech said, “You look so healthy for a CF patient.” Was this a compliment or a punch to the throat?
A thousand words raced across my mind and I wanted to spit words out like Eminem raps, but I just flashed a smile and said, “Have a good day.”
We next went to my CF doctor and he discussed how I'm still culturing for NTM and that now there might be a couple new strands of these infections. He said it's nothing to be too concerned about because my lung X-rays don't show “too much damage” other
than what the CF has done to me over the years of my life.
But, he then told me, “We are going to need to treat this soon. How is trying to become pregnant coming along?” Those words hit me like a bag of bricks. I explained to him that it hasn't happened yet but that I just needed more time. But, do I have the
time? Can I push this treatment back any further? Am I hurting my lungs by doing this to myself? I'm saying all of these questions in my mind but none of them out loud.
With a lump in my throat, I blurted out “Give me a few more months, please.” He said he'd give me three more months, but after that we have to start treatment to keep them from spreading more than they already have. I looked at my mom for reassurance,
I felt the tears in my eyes but wiped them away before anyone in the room could tell how much this was affecting me, emotionally and physically.
To outsiders this might not be a big deal, but I'm 31 and the older I get, the worse my lungs and overall health get. We know CF patients don't live forever, and they don't often live to old age. I have had more friends die in my lifetime from CF than
I can count. I have had to say goodbye to more friends than most people my age. That's heart-wrenching enough.
As my mom and I walked out of the hospital, I said my last prayer for this visit hoping that God heard every word. I started to tear up, I could feel the tears building but I refused to blink. In that moment I kept it together, for myself and also my
mom. I didn't want her to know how defeated I felt at that moment.
After driving back with my mom, I left my mom's house to go home. I instantly felt tears forming. I drove about a mile before pulling over -- I couldn't hold back anymore. I cried more in that moment than I have in years. Am I racing against time?
When I got home I went straight to the shower, I don't even remember how long I was in there crying. My husband, Joseph, came home and asked why I was showering in the dark, and I could tell he knew I was upset. I got out and didn't have the courage to
look him in the eyes. I felt like by saying the words I could break his heart.
Joseph is everything I ever wanted, and I know I am more than he bargained for. He knew I was sick when he met me. But, did I ever think how deeply my health could affect him? That I could be robbing him of a future child? When I feel like I'm lost and
it's dark around me, he's the only light that guides me back. Am I his light or am I his darkness?
So please, before you ask us, “Are you pregnant yet? Are you going to have kids?” stop and think. Before you say something about us not knowing how to raise a child because we don't have one, stop and think. Because you
don't know how badly your words hurt. Before judging me for my personal beliefs about being a CF patient and having a child, stop and think, because you aren't me. Instead, just send a heartwarming prayer. We are all fighting some
type of battle and right now our battle is tough and lasting a lot longer than we imagined. And, we're constantly searching for something good to find a way out.
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Adult with CF
Britt lives in Austin with her husband Joseph and four fur babies. When she's not doing breathing treatments or spending time in the hospital, she enjoys cooking and baking and decorating fresh cookies. She's also a sucker for reality tv and cooking/baking
shows. Her green thumb helps her care for succulents and cacti (her absolute favorite!) Britt's grandma taught her how to crochet and she takes much pleasure in the work that goes into making something that can be so meaningful to someone. She blogs
about her life experiences and struggles with cystic fibrosis with her blog, Breathe for Britt - Diary of a Warrior.
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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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