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.
In today's post, Rusalka the Corgi talks about her role as a service dog for her mom with cystic fibrosis.
Rusalka the Corgi
August 24, 2017
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Today's post on the CF Community Blog comes from Rusalka, a cute Corgi from Tennessee training to become a service dog. Rusalka would like to thank her mom, Kassandra Case, for typing this for her because she has paws.
I am the happiest dog on the face of the planet! Want to know why? I get to go and do everything with my mom. I am a service dog (in training). I hold that very dear and true to my heart. I love my job! Sometimes, I don't even know I am doing it. My hooman deserves the best support, and that is what I will give her.
My pawrent did not get me at a service dog training specialty institute, but adopted me from a woman who was selling Corgis. My mom wanted a Corgi ever since she was a little girl. She tells me all the time that I am her dream dog, and it makes me feel so special.
According to my mom, there are a few ways to get a service dog. For starters, there are special programs where you can tell them what kind of service dog you want and why you need one. They will then train your dog and handle the certification process for you.
As for me, my mom and grandpawrents train me themselves for the tasks mom needs me to learn, such as waking her up when her oxygen mask falls off at night, by making me do each task repeatedly for 15 minutes, twice a day. If we are out paddle boarding and she gets tired, I jump in the water and pull her back to the group so she doesn't get left behind. I think it's my favorite thing to do for her. I have also been taught to run to my mom if I hear her coughing, and stay by her side. I especially love cystic fibrosis treatments -- they are the best parts of my day. You can usually catch me leaning against mom's vest, relaxing as she does them. I have learned that during treatments, I do not leave mom's side.
As for my service dog certification, my pawrent read the guidelines and rules as to what she needed to train me to do. At this moment, I am certified as a therapy dog. I am going to strict classes soon, where they will teach me how to be an out-and-about service dog for respiratory service. You can find local trainers wherever you live to train your doggy.
I am very beneficial to my mom in many ways. I provide understanding and unconditional love when it may sometimes be hard for other hoomans to do so. Being a companion and a friend to her in her lonely times helps her know that she isn't alone and I will stick by her through thick and thin. Everyone with pre-existing conditions deserves the love and all the benefits that a service dog can give. My mom will never be alone!
If you are interested in my story, and would like a service dog to help you along in life, my mommy and I highly recommend it. To keep up with my adventures and learn more about the services I provide to my pawrent, check out my Instagram: @Rusalka_TheCorgi.
And remember: Get out and adventure, no matter how small your thumpers might be!
Adult with CF
Kassandra was diagnosed with CF before birth and adventures through life one breath at a time. Every day is a new adventure, and she enjoys hiking, kayaking, and paddle boarding. Kassandra is passionate about showing others that people with CF can do anything they set their minds to, and loves to push the boundaries of what society considers “possible” for someone with her disease. Follow Kassandra on Facebook and Instagram @thesassyCFer_.
Rusalka the Corgi
Service dog of an adult with CF
Rusalka was born in August 2016, and was bought by a young woman with cystic fibrosis, Kassandra, to become a service dog shortly after. Rusalka is currently therapeutically certified, and is working to get her full certification. In her spare time, she loves paddle boarding, hiking, swimming, and running around with her mom. You can follow Rusalka’s adventures on Instagram @rusalkathecorgi.
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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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