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.
While 97-98 percent of men with cystic fibrosis are infertile, they can still enjoy normal, healthy sex lives and have biological children with the help of assisted reproductive technology (ART).
To understand the inner workings of infertility in men with cystic fibrosis, it is helpful to first understand the biology of the male reproductive system. It has three primary parts: the testicles, the epididymis and the vas deferens (see Figure 1).
Sperm (the reproductive cells) are developed in the testicles. The epididymis is a series of tubes that sit behind the testicles where sperm are stored until they are made available at ejaculation. The vas deferens is a long tube that connects the epididymis to the ejaculatory ducts and acts as a canal so that mature sperm can come through the penis during ejaculation (see Figure 2).
Most men with CF (97-98 percent) are infertile because of a blockage or absence of the sperm canal, known as congenital bilateral absence of the vas deferens (CBAVD). The sperm never make it into the semen, making it impossible for them to reach and fertilize an egg through intercourse. The absence of sperm in the semen can also contribute to men with CF having thinner ejaculate and lower semen volume.
This distinction between infertility and sterility is key to understanding the effects of CF on male reproduction. Even though the vas deferens is blocked or missing, the sperm are not. In fact, sperm production in the testicles is normal in 90 percent of men with CF and CBAVD, meaning that most men with CF can still have biological children through assisted reproductive technology (ART). Your doctor should be able to give you a referral to a urologist (or male reproductive expert), who can use medical tests to confirm whether you are infertile.
Watch parents with CF and a clinician talk about male infertility and the processes involved in having biological children.
Although the cause of CBAVD is not conclusively known, it is thought to be associated with cystic fibrosis transmembrane conductance regulator (CFTR)
gene mutations that also cause problems in the pancreas and lungs. Since CBAVD is believed to be caused by similar genetic patterns found in CF, it is incredibly important for men who have been diagnosed with CBAVD to also
get tested for CF. Because CBAVD often has no external signs or symptoms and still allows men to have
a fulfilling sex life, some men may not even find out that they have CF or CBAVD until they have trouble conceiving a child.
Even though most men with CF are infertile, some do still have sperm present in their ejaculate. If your infertility has not been confirmed by medical tests, you should be sure to use
contraception to prevent the possibility of an unplanned pregnancy.
Another condition that men with CF may experience, although it is rare, is a type of infection known as male
candidiasis. It may display symptoms such as sores on the penis, irritation, and itching.
Watch the webcast below featuring urologist Thomas J. Walsh, M.D., M.S., and Moira Aitken, M.D., to learn:
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