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.
Shortly after receiving a double-lung transplant, I was fortunate enough to meet my donor's family. It brought us peace, healing, and connection.
August 23, 2018
How We Explain My Child’s CF
My Letter to My Donor’s Family
“Hello,” I answered the phone. I recognized the number as one from Fairfax Hospital. It was the social worker. It was weird that she was calling but I had my one-year transplant clinic appointment coming up and I assumed she wanted to prepare me for some things we would discuss. “I have a letter for you from your donor's mother. Would you like me to email it to you?”
I was in shock. I had written a letter to my donor's family, but hadn't sent it yet. It's rare for the donor's family to write first. Stunned, the only word I could come up with was “Yeah.” With shaking hands, I opened the email and started to read.
It is with both sadness and joy that I write you this letter. My daughter, my heart passed way 12 months ago, on June 19, 2016.”
Tears ran down my face. I continued to read about Samantha. I felt sadness that she had passed away and sadness for the grief her family had endured over the past year.
My heart hurt for them. I was grateful that she left me the gift of life through a new pair of lungs. It was a while before the tears stopped.
I immediately called my mom, who thought something bad had happened because I was crying so hard. “I received a letter from my donor's mom,” I cried into the phone. She came home right away and I read her the letter. She cried with me. I called my brother, Byron, who lives in Boston. All he could say was, “Wow,” but I could hear the tears in his voice. I read that letter many times that day and I have read it often since.
I had planned to hand write my letter to Samantha's family and send it in the future, but I wanted to respond right away. A few hours later, after changing a few things because I now knew a little about my donor, I sent my response to Samantha's mom, Angela.
Angela and I wanted to meet. From the moment I found out I had a lung transplant, my mind immediately had gone to my donor, and I have thought about her every day since. Who was she? What did she like to do? What caused her death?
We decided to meet in early September so my brother, who was traveling, could be there. We agreed not to communicate before the meeting.
Arriving at our meeting spot, emotions flooded my body. I was nervous, excited, and scared all at the same time. Butterflies started to go crazy in my stomach. Thoughts similar to those you would have before a first date started to run through my mind. What would they think of me? Would I say something stupid? This was WAY more important than a first date, though. I thought, “Am I ready for this? Of course you're ready for this.”
When we met, I walked straight into the arms of Angela. Neither of us had words for the moment, just tears.
When we did finally speak, Angela told me that she felt Samantha's presence for the first time in a year.
That meant so much to me, that I could give Angela something so special. I let Angela listen to Samantha's lungs breathe for me. Most importantly, I let Angela talk to me about Samantha. The donor family meeting was all about Samantha and the great gift she had given me.
After a bit, I invited Angela and her family back to my parents' house for some BBQ, and we spent the next four hours hanging out on the screened-in porch. I learned more about Samantha and they learned more about me.
We shared photos and stories. I met Samantha's youngest sister, Allison, who was quiet at first, but became more talkative as she grew more comfortable. It was so special for her to open up to me. Toward the end of the evening, Samantha's younger sister Sara told me she felt so comfortable around me -- like we had known each other for more than hours. I felt the same way. It was an instant bond. I also got to meet Samantha's sweet dog, Benelli Rose. I am usually afraid of bigger dogs, but she was so sweet, gentle, and kind -- she won me over!
The saying, “They may not remember what you said, but they will always remember how you made them feel” captures the evening for me. I don't remember everything we talked about, but I remember the excitement and happiness and laughing and smiling. I also remember sadness and holding back tears at times. But most of all, I remember how comfortable I felt all evening around Samantha's family.
Angela, Samantha's dad, Ray, Sara, Allison, and I have kept in touch. We met again in Richmond, Va., last fall and they came up to Fairfax, Va., to visit me when I was very sick this past March. I am heading down to Wilmington, N.C., to meet the rest of Samantha's family and her friends in the summer. I want to see where she grew up and enjoy some of the same places that Samantha did.
Meeting Samantha's family has been the greatest experience of my life. I encourage all recipients to write a letter to their donor's family. Even if you don't receive a response, letting them know how thankful you are is so important and it could mean the world to your donor's family. If you're the donor's family, I encourage you to be open about writing a letter to the recipient and the possibility of meeting them. Angela has told me that she felt angry about Samantha's death but when she received my letter she felt peace. My decision to respond to her and meet was definitely the right one.
If you'd like to read Angela's full letter to me, click here. To read the letter I wrote in response, click here.
Adult with CF
Jackie was diagnosed with cystic fibrosis at birth. A native Virginian, Jackie grew up just outside of Washington, D.C. She earned a bachelor's degree in finance from Radford University and went on to start a career in corporate finance upon graduation. Jackie received an emergency double-lung transplant at Inova Fairfax Hospital on June 21, 2016. She spent four and a half months in the cardiovascular intensive care unit, and spent the last year and a half focusing on her health and overcoming obstacles that have come her way. You can follow Jackie on Instagram at @pricelessbreaths, as she raises awareness for cystic fibrosis and transplant and shares her personal journey. You can also find her on her blog, Priceless Breaths.
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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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