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.
Losing my brother when I was just a teenager left me feeling isolated in my grief. There was no internet or social media in the 1980s to connect with other people with CF. Therapy and time eventually allowed me to cope with his loss, open up to family and friends, and invite them to share in my memories.
February 5, 2019
How I Use the CF Patient Registry to Inform My Care
How I Calm My Nerves Before Clinic Days
I will never forget the feeling of utter loneliness in July 1988 when I went to set the dinner table for the first time. The funeral had been the week before. The seven days of Jewish mourning known as shiva -- most of which I spent holed up alone in Jason's room going through his things to soak up every ounce of him that I could -- were over. It was time to settle back into normal life. My mom was making dinner, as usual. I was setting the table, as usual. I took out four plates, as usual. Only now there were only three of us. Putting the fourth plate back was a slap in the face of what our new normal was to be.
My brother, Jason, was 22 months older than me. It was family folklore that when I was born, he would climb into my crib to sleep with me. When we were older, we'd sometimes switch bedrooms to “pull one over” on my parents. We didn't do sibling rivalry. Sure, there was the occasional figure four headlock and unprovoked punches to the face, but there was nothing but love between us. After misdiagnosed bouts of pneumonia, my brother was finally diagnosed with cystic fibrosis when he was 7.
As a precaution, I was given a sweat test and was diagnosed with a “mild” case at age 5. Our trajectories with CF were very different. Jason was pancreatic insufficient and was in the hospital four times a year with lung exacerbations. He had pulmonary therapists come over daily to give him airway clearance treatments. I was chubby and healthy, faking my way through my airway clearance but suffered from chronic nasal polyps. I usually joined my brother in the hospital once a year to have sinus surgery and IV pole races down the hallways.
Times were different in the 1980s, pre-internet. I did not know the dire progression of CF. I was blissfully unaware that the disease was weakening my brother every year until he told me when I was 10. I don't know why he knew people could die from CF and I didn't. Once I found that out, it was like my blinders were taken off. I saw how thin he was, how his cough racked his entire body. My anxiety surrounding his hospital visits grew.
However, I also saw how he was an A student, how he played Little League, how charismatic he was, and how determined he was to go to an Ivy League college. I chose to focus on these strengths ... even when he started using oxygen when he got home from school. Even when his hospital visits were more frequent and lasted longer. He was in the hospital for more than a month as my ninth and his 11th grade school years ended.
At this point, I was barely holding it together on the inside, living in fear. I was with family friends on July 4th when my parents called for them to bring me to the hospital. I knew before they had to tell me -- I was going to say goodbye.
When he died, my heart was absolutely broken and remained so for quite a long time. At 14, I did not have the ability to put my feelings into words, and I did not know who to turn to. My parents were grieving quietly together, so I grieved quietly alone. None of my friends had lost someone close to them. They didn't know what to say to me, and when school started in September, only two teachers acknowledged my devastating loss. There was no school counselor to talk to. In fact, as an adult, I became a social worker to work with adolescents so that they would not feel as alone as I felt.
I hated meeting new people because I was faced with the question, “Do you have a brother or sister?” I did not know how to answer. Saying, “Yes,” and explaining his death brought on a whole uncomfortable conversation I was not willing to have, but saying, “No,” felt like a betrayal. In college, I only told my closest friends about him and about my disease.
Still thinking my symptoms were mild, I did not feel like CF was part of my identity, just Jason's. I was not very compliant. That changed when I met my husband in my mid-20s. Around the same time, my respiratory therapist sat me down and showed me that my lung function had dropped considerably over the years that I ignored my disease. I was not “mild” anymore.
The good news was that I had the power to start taking care of myself. I got a vest, started exercising, taking my meds, allowing my doctor to send me for tune-ups and, thankfully, I have maintained my health. My brother died before he could take advantage of the drugs that have come up the pipeline in the past 30 years. After all that my family has suffered, I decided I would never let anything happen to me if I could help it. I changed my lifestyle -- stopped going out so much, changed careers to one that required less traveling and late nights, and eventually stopped working to focus on building up my health.
I spent many years in therapy coping with the feelings of loss that I had bottled up after my brother died. My family reached a place where we could talk about him openly together and with others.
That step forward was invaluable in helping me share his memory with friends, new and old, and with my children who did not know him but know all about him. It is with pride and love that they are both named after him in some way, as is custom in the Jewish tradition.
It has been 30 years since my big brother passed away. The pain has gotten easier, but it has not gone away. I still think about him every day without fail. My husband and I usually realize the anniversary of his death is coming, not because it's close to a national holiday, but because I instinctively become more despondent. Being able to name that and give myself some space to mourn is so helpful.
Memories of Jason play a significant role in my extended family. We celebrate his birthday and the anniversary of his death with his favorite cookies and share stories of him growing up. Rather than fill me with sadness, my heart swells with love, happy tears, and gratitude for the time I had with my brother.
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Adult with CF
Melissa was diagnosed with cystic fibrosis at the age of 5. After briefly working in the music industry, she became a social worker, which heightened her interest in politics. Melissa began advocating with the CF Foundation in 2011 and served as National
Advocacy Co-Chair for 3 years. She continues to advocate in Washington, D.C., and New York on behalf of the Foundation for policies that will help extend and better the lives of people with CF and their families. She is a member of the Cystic Fibrosis
Reproduction and Sexual Health Collaborative (CFReSHC), which produced the Cystic Fibrosis Sexual and Reproductive Guide -- a guide written by patients for providers and patients on topics such as body
image, contraception, hormones, family building, and more. Melissa resides in downtown New York City with her husband, two children, and two guinea pigs.
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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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