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.
This piece discusses suicide and suicidal ideation, and some people might find it triggering. If you or someone you know is suicidal, please contact the National Suicide Prevention Lifeline at 800-273-TALK (8255).
As a person with cystic fibrosis, I used alcohol and drugs to fit in with my peers and cope with the hardships of having a chronic disease. I still struggle with sobriety, but I have taken control of my health and my life.
June 10, 2021
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My name is Joey, I have CF, and I'm a grateful recovering alcoholic and addict.
I had my first alcoholic drink -- a beer -- at an 8th grade party, quickly followed by a bottle of wine, lots of drunkenness, and the first of many blackouts. The next morning, I woke up in the front yard of a friend's house in only my underwear and a
newly chipped tooth. Everyone recounted the previous evening, laughed, and cheered me on. It was the best feeling. I suddenly wasn't the awkward kid who was always coughing or in the hospital, smelled bad, and couldn't get out of his own head. Before
that beer, I'm not sure I had ever spoken to most of those kids. Alcohol helped me find a voice that night.
Over the years, I've woken up -- drunk or hungover -- on park benches, strangers' beds, in the hospital, in car accidents, and in jail. I developed a transient relationship with my family -- going weeks and months without calling my mother. When alcohol
wasn't enough to blur the traumas of CF, abandonment issues, and the fear of death, I became a “trash can” -- I swallowed, smoked, snorted, and shot up every available drug. It felt like a
never-ending cycle of trauma, addiction, and terrible, life-risking decisions. I would wait months to tell my doctors when I was sick. I was paranoid and angry at my CF docs.
I didn't want to die, but a voice in my head kept telling me I didn't belong, that I didn't have a future. For decades, I believed that voice.
During the few years leading up to my eventual breaking point, my drinking only escalated. I put booze in my coffee, I brought flasks of liquor to work and stashed them in my locker, and I'd guzzle a bottle or two of wine before bed. I began to resent
my partner, friends, co-workers, and family. My siblings started getting married and having children. During holidays, I was the only one getting drunk. They would all have a couple of beers while I chugged tequila, wine, and whatever else my mother
and stepfather tried to hide from me.
I was often too drunk to figure out my insurance, and I'd go years without it. For months, I'd let my illnesses fester, knowing I didn't have
the money to pay for a hospital visit. And when I got sick, I blamed everyone in my path. I fought with people on social media. I ghosted friends. I cheated on and gaslighted lovers. Eventually, alcohol wasn't enough, I found crystal meth. It hooked
its claws into me and refused to let go. It's a terrible, disgusting drug, and it's so very addicting.
On April 1, 2019, my partner of 5 1/2 years broke up with me. I was a complete mess, a hurricane of debt, disease, and drama. He tried his best to weather this storm, but it was clear that I was a category 5. Over the next few days, I tried to drown myself
in booze and painkillers. I wrote three suicide notes. But I couldn't kill myself. It was becoming clear to me that alcohol was only making this situation worse. Over the next week, a man in Boston friend-requested me on Facebook. This new friend
and I began chatting and he told me that he was sober, a drug-addict in recovery. He had hope -- a hope I desperately needed. So, I began my journey to sobriety. He brought me to a 12-step program and with the help of other sober people, I began to
have faith. Being honest and vulnerable didn't come naturally; I'd built up walls and defenses for decades. But they gave me the tools for change. In the beginning I wrestled sobriety like it was a bear. Who, in their right mind, wrestles a bear?
My addiction didn't want to see me go. Even though it was destroying my life, it felt like it was all I knew.
It's been two years since I've had a drink of alcohol. In January, I relapsed on crystal meth. And today, I have 119 days of continuous sobriety. Over this time, I've had to change my way of thinking. All my traumas that I used to drink over I've turned
into my greatest strengths. There are days when I am awash with serenity. There are days when I'm pacing my apartment, pulling out my beard hair over doubt and resentments. But I know that a drink or drug will only make things worse. Here are some
things that I'm really proud of: My relationships are becoming healthier. I'm learning that when I'm my authentic self, those who are looking for me will find me. I listen to my doctors, and I make it to all my appointments. I found an amazing
care team at Boston Children's Hospital. Without my sobriety I wouldn't have found them, and I might not be on Trikafta today. I'm a great single dad to my cat, Dorian, and my new
puppy, Grey. That partner who broke up with me is now my best friend.
And this summer, I will turn 40. In 1981, this wasn't even a possibility. I'm living a life beyond my wildest dreams.
If you are struggling with addiction -- booze, drugs, sex, food, fantasy, etc. -- you are not alone. We are all over the world. Tell someone. There are many sobriety assistance programs, such as Alcoholics Anonymous (AA), which will welcome you. And with
Zoom, you can find AA and all its sub-groups everywhere. I wake up every morning and do something I never did before I got sober -- I pray to God and the universe for patience and willingness to be sober, and of service to my fellows, friends, and
family. Sobriety takes time, practice, and support. I'm so grateful for this temporary life. Now I look in the mirror -- I look at this almost 40-year-old face, this body covered in tattoos and scars. I tell myself that I belong here. I belong. And
so do you.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Joey graduated from Dean College with a theater degree, and for over a decade he created theatrical productions in Boston. He is an advocate for Trans Rights, Sex Workers Rights, and Black Lives Matter. Currently, Joey is a sex coach living in Miami Beach
with his black cat, Dorian, and his Aussie Cattle pup, Grey. Follow their adventures on Instagram.
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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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