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 didn't know until date four that my future wife had cystic fibrosis and was a lung transplant recipient. She was too wonderful for me to care.
November 12, 2020
A Late CF Diagnosis Explained Everything
Planning for a Future I Never Thought I’d Have With CF
When you meet someone special, do you really know they are going to be your one and only? A fool would tell you yes after the first date. That same fool would be the one who is filled with love lasting more than an eternity.
Looking back on my first dinner with Amber, I can tell you she was someone special -- still is today. She is the love my soul craved on its long walk across the bridge of loneliness. We've all been there, looking for that one -- analyzing ourselves and
going crazy trying to figure “love” out. I'd love to say that I was the fool who could predict the future, but I can't because part of me -- the Capricorn inside -- is probably the most finicky version of the astrological symbol you'll ever meet.
What I can say is that I knew Amber was like no one else, and in due time I'll share how that realization came to fruition. For now, allow me to invite you into my pre-Amber world.
Life was in full swing. I loved my job. I was renting my first non-studio apartment. I had bought my first new car, and everything was rolling forward. Stop the carriage, I'm forgetting something in my exquisite formula of success. Love. I didn't
have it. But where is the time for that when one has everything they need? Ah, that's the kicker. I didn't have it all, and more than anything, I wanted what I never knew existed -- to be loved unconditionally. Going to bars, striking up side conversations
at the gym, and building a relationship at work were not my cup of tea. That's when I turned to the almighty wasteland of knowledge and wisdom -- the internet.
I tried website after website, and it felt like I was entering my name in a meat raffle. About to quit or, rather, try a little less -- because we Capricorns don't know the word surrender -- Amber returned a genuine response. I must have read her email
out loud 40 times before I responded. Honestly, I don't even remember today what it said, but it intrigued me enough to write a response and the rest is history.
Our first date was at a place called “The Garden.” (It's “Detroit Liquor” and “Yard Ale of St. Pete” now.) The romance of wonderful conversation, nervousness, and exquisite food are etched in my memory.
That night, I didn't know two things -- first, I was falling in love and second, Amber had cystic fibrosis.
In fact, she had gone through a living donor lung transplant, a more experimental procedure at the time. I found out on date four and paid it no heed because to me, Amber was Amber
and not someone with CF. She was alive because her brother donated one lobe and her mother another. I'll cover that another time because this article is about my version of the Firehouse song: “Love of a Lifetime.”
Fast forward more than a decade. As I sit contemplating the amazing adventures to choose from that showcase what life after a lung transplant looks like, I'm left thinking about the smile on Amber's face as we tackle every known fun challenge together:
skydiving; downhill skiing; hang-gliding; obstacle course racing (jumping over fire and crawling through heavy mud and under barbed wire); mixed martial arts; buying our first, second, and third houses together; and me stepping on her dress at the
altar and hearing the ripping sound the train made. Were there pitfalls and snags along the way? Sure. What great story doesn't have those? But those will be expounded upon later.
For now, the most important aspect of this story is that CF is physically debilitating and even after a transplant, it is never gone. CF after a transplant is also mentally debilitating, if you
let it be. That's where hope comes in and love triumphs. Together, we are an unstoppable force of boundless exploration. As Aristotle put it: One soul living in two bodies. With each step we take on the winding path called life, we take turns guiding
each other through our fears.
My back is strong, my shoulders are available, and we lean on each other through thick and thin.
Amber is determined and puts more on her plate than one can ever possibly tackle in any given day, challenging me to reach for unknown planets. I love her for that because without her, I wouldn't be writing this post. More importantly, I wouldn't be the
fool I referenced earlier.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Nicholas is the husband of an amazing woman, Amber. He met his wife on the internet, not knowing she had CF or had gone through a lung transplant. Once he found out, life continued as normal because he understood CF does not define who a person is. Together,
they wish to help people explore what life looks like after a lung transplant.
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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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