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.
I have been fortunate enough to connect with my donor. The connection between us runs through her mom. It all started with her letter to me.
August 21, 2018
My Letter to My Donor’s Family
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I want to share with you my experience meeting my donor, Samantha's, family. But, first, I want to share the letter I received from Samantha's mom, Angela. With Angela's permission, below is the letter I received on June 30, 2017, one year after my double-lung
It is with both sadness and joy that I write you this letter. My daughter, my heart passed away 12 months ago, on June 19, 2016. She was pronounced and went home to be with God. 12 months ago you were given the chance to live again, and for that I am
so very proud of my daughter Samantha.
Samantha grew up in Wilmington, NC. She was 20 years old when she died. She was a bright girl, and loved everyone. She met no stranger, even though I always taught her “stranger danger” LOL, she didn't listen. She didn't care if you were rich or poor,
in her eyes everyone was the same. In those short 20 years of Samantha's life she grew up surrounded by friends, family and her beautiful and sweet dog Benelli Rose (now my Grand Dog). Samantha loved the beach and that is where she spent a lot of
her free time.
Samantha was a daughter, Granddaughter, sister, friend, and soon to be Aunt to my beautiful Grandson Brayden. She couldn't wait for him to be born. Samantha was not a shy girl. She knew her faults and she accepted her imperfections. She laughed at herself
and took advantage of opportunities to grow every day. She was not perfect and she was the first to admit it.
The day my daughter died a piece of me went with her. I have spent every second, minute and hour thinking of her. I think about how she will never have the chance to marry, or be a mother herself. I wonder how her life would have turned out, would she
have been a doctor, veterinarian, teacher, or a stay at home mom. As parents we expect to die before our children, so when you have to bury one of them it's like your burying yourself. I have somewhat come to grips that it's time for me to move on,
although it will be easier said than done, but I have two other girls, my Grandson and my husband to live for.
Since Samantha's passing you have crossed my mind a lot. Samantha was always such a giving person, and her desire to be an organ donor was but one example of her selflessness attitude towards life. I guess I have some peace knowing a piece of her still
lives on in five people that I hope she was able to save. The thought of my daughter's heart continuing to pump, and her lungs continuing to breathe, is so heartwarming to me.
I guess I am going to end with the hope that you will allow me and my family to meet with you. I would like to tell you more about Samantha and how big her heart was. Maybe it's too much to ask, but I hope you will allow me this last chance to hear her
breathe for someone else … for you.
Sincerely yours, Angela”
Tomorrow I will share the letter I wrote to Angela in reply.
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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