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.
After careful thought, I decided to add medically prescribed cannabis to my care regimen. After using it for six months, I've noticed an improvement in both my mental and physical health.
December 8, 2020
What I Learned About Treating NTM at NACFC
Mental Health Post-Transplant
As a 24-year-old woman with cystic fibrosis trapped in her house in Florida during a pandemic with only her partner and two cats, things are destined to be challenging. The world's new normal brought out the worst of my anxiety and depression. Knowing
I couldn't fit more psychiatric medications into my regimen, I decided to try something new myself: medical cannabis.
Before making any rash decisions, I thoroughly researched the practice. Although I couldn't find too much information regarding female cystic fibrosis patients and cannabis therapy, I did find research suggesting cannabis could soothe anxieties,
aid in digestive issues, inspire weight gain, and allow for a better night's sleep. With that in mind, I decided any of my concerns in relation
to cannabis therapy were outweighed by the potential benefits.
I spoke with a doctor who specializes in cannabis and was well informed on cystic fibrosis. We walked through my list of ailments and she responded to each one with information on how cannabis interacts with the body to provide support, relief, and comfort.
Because cannabis doctors in Florida can't legally write prescriptions, they can only offer recommendations to their patients. My doctor vehemently advised against smoking and vaping to avoid lung damage. She suggested I use tinctures, a drop or two
under my tongue. I was overjoyed that she worked within my personal health boundaries to ensure I could receive the benefits of cannabis without risking my lungs.
Once I was approved for my medical cannabis card, I spoke to each of my CF doctors during our telehealth visits and informed them I introduced cannabis into my medical routine.
The responses of my care team doctors were both positive and relaxed -- they seemed to react no differently than they would had I told them I started taking a new vitamin. They asked questions regarding my dosage and benefits with the intention of making
sure the cannabis did not interact negatively with any of my other medications (which it has not). They encouraged me to continue updating them on my cannabis journey and ordered some lab work, which would also let us know how cannabis was treating
Before starting cannabis, I was taking three psychiatric medications per day. Even with those medications, I was still struggling to find joy in my life, as my health has always been a problem area. It's challenging to find the energy and motivation to
care for yourself when all you want to do is curl up on the couch. Since starting cannabis a few months ago, I wake up happy and I go to bed at peace. My care team is elated that I've packed on a healthy amount of weight due to what is known as “the
munchies.” In terms of my stress and anxiety, I've been able to safely go off one of my psychiatric medications because cannabis has proved to be a healthier and more satisfactory form of therapy. This is because it is neither addictive nor accompanied
by unfavorable side effects, such as zombie-like moods and lack of sex drive. I've also been able to cut back on my talk therapy sessions because cannabis has helped me emotionally process a lot of my grief relating to my health and personal traumas.
Overall, my experience has been positive. Implementing cannabis into my routine has been so easy. It takes me an hour to get through my morning breathing treatments, and this doesn't
include the amount of time I need to clean my supplies, rinse my sinuses, take my oral medications, and prepare breakfast so I can take my pills correctly. Needless to say, mornings
can be time consuming and exhausting.
So, when I take my first dose of cannabis in the afternoon, I'm finally able to relax into the rest of my day. It's like an unfolding of sorts. Cannabis inspires me to be both productive and at ease. I do yoga, tidy up my space, go for walks outside,
spend quality time with my cats (I'm obsessed with them), and work on a cannabis-centric podcast with my bestie.
The best news of all came a few weeks ago when my annual lab results showed that my body was healthy (as healthy as a body with cystic fibrosis can be).
My care team and I were thrilled. A strict medical routine with all the treatments (including Trikafta®!) and therapies prescribed
to me by my CF care team played a huge role in why my body has managed to stay stable during this pandemic. However, I believe cannabis therapy has made my journey of trying to stay healthy more rewarding. I'm
so happy that my CF care team responded positively to my new medicine. The fact that they respect my autonomy enough to let me explore all my options along the journey of self-improvement is a blessing and I'm forever grateful.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Young adult with CF
Sydney is a young adult who was diagnosed with cystic fibrosis at birth. She is currently pursuing a bachelor's degree in English at Florida Atlantic University and aspires to be a writer and motivational speaker. In her spare time, Sydney enjoys studying astrology, practicing yoga, and projecting peace and love outward. Sydney can be found and contacted via Facebook.
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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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