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.
Because of the medications I must take as a result of my lung transplant, I thought it might be too difficult to conceive a baby through in vitro fertilization. I was wrong. I'm expecting a son in November.
September 21, 2020
Why I Chose to Go Back to School in Person
Having a Newborn With CF During COVID-19
It has been more than four years since my last post, “One Thing I Wished I Knew Before My Double-Lung Transplant,” and so much has changed!
We have learned a great deal about the science behind infertility and how advancements have made it possible for people like me to have children. We knew through a procedure called in vitro fertilization (IVF) that it was possible to have children. However, we had doubts that we would be good candidates due to the transplant medications I take to prevent rejection and infection and suppress my immune system. The most significant lesson we have learned is don't believe everything you hear.
My transplant doctor referred us to the fertility clinic at Emory University Hospital Midtown, Atlanta, shortly after my blog post in 2016.
We learned that it was possible to still have a child of our own, even though we had been told by others that the transplant medications would hinder our ability to conceive. Not only was it possible, we would have the same chances as a “normal” couple.
We both completed genetic testing -- for my wife to make sure she didn't carry a mutated CFTR gene, and for me to make sure I didn't carry anything else besides cystic fibrosis that may be a potential
problem for our baby.
Being a male with cystic fibrosis, the ability to conceive naturally was out of the question, which is the case for
most males with CF. I had to have a procedure, testicular sperm extraction, to retrieve the sperm for the fertilization process. My wife also had to have a procedure where they retrieve as many eggs as possible. Prior to her procedure, she had to
take many injections and medications to prepare her body to produce an abundance of eggs, so there is a better chance of creating healthy and viable embryos. Both of our procedures were very successful and -- after the fertilization process, also
called intracytoplasmic sperm injection -- we were able to create two healthy embryos.
Finally, the day to implant an embryo came -- TRANSFER DAY! This was the day that we had worked so hard for. This was the day that we had dreamed about all these years. This was also the most stressful part of the entire process. All the procedures, months
of injections, fertility appointments, and sleepless nights led us to this point. The chances of the embryo “sticking” are generally 50 percent in most cases. Due to the health and age of my wife, and the maturation of the embryo we were transferring,
the doctor gave us a 70 percent success rate. After the transfer, all we had to do was wait two weeks and let the process take its course. Talk about sitting on pins and needles.
After all this time, four years of preparation and hard work, we were ecstatic to find out that our transfer was successful. Now all we had to do was make sure we did everything in our power to make sure this embryo remained safe and healthy.
Our pregnancy has been a little different than we had imagined with the COVID-19 pandemic unfolding at the same time. It has been challenging, but we have managed
to stay positive and focus on bringing this miracle into the world safely. We recently had our 20-week anatomy scan (which I was not allowed to attend due to COVID-19), and Baby Cole is healthy and doing fantastic! Thankfully, there is a company near
our home that offers private ultrasounds that I can attend, so we get to see our baby boy whenever we want.
This journey has been a blessing to say the least. God has given us hope and a chance to have a family. Our dreams are coming true right before our eyes. It is a truly amazing experience.
Baby Cole is due Nov. 28, 2020. We cannot wait to meet him and introduce him to the world.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Diagnosed with cystic fibrosis at 3 months old, no one knew what the future held for Kyle, but he never let the disease define him. He is a husband, brother, son, musician, friend, colleague, entrepreneur and fighter, who just so happens to have a life-threatening illness.
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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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