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.
Assisted reproductive technology (ART) is often a popular family building option among people with cystic fibrosis. Learn more about common ART techniques to find the right family building method for you.
For some women and most men with cystic fibrosis, getting pregnant the “natural” way can be difficult or even impossible. However, they can still have biological children through the use of assisted reproductive technology (ART).
ART includes in-vitro fertilization (IVF), intrauterine insemination (IUI), surrogacy, and many other fertility therapy techniques. By understanding the basics of common ART procedures and learning more about the pros and cons, you can ultimately evaluate whether it is the right family planning decision for you.
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). 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 ART.
If you are a man with CF who is interested in having biological children, the first step is to go to a urologist who will be able to perform surgical sperm retrieval or testicular sperm aspiration (also known as MESA or TESA), a surgery in which a needle attached to a syringe is placed into the testicle or epididymis to extract sperm.
Once this procedure has been completed, the mother of your child will need to go through in-vitro fertilization (IVF) to create an embryo to implant into her uterus.
“My wife and I went to see a urologist where we learned that even though I was officially unable to have children through natural means, my CBAVD did not mean that I was sterile. According to the urologist, I needed a simple surgery to retrieve the necessary sperm. Even though a surgery that involved cutting a testicle didn't sound so simple to me, the surgery went well and my recovery was short. This procedure, coupled with our newfound knowledge, paved the way for my wife to undergo IVF.” -- David Cobb, adult with CF
Once you have discussed the implications of having a family and pregnancy with your CF care team and partner, the next step is to look into common methods and procedures.
One of the most common types of ART is in-vitro fertilization (IVF), or the process of manually combining an egg and sperm in a laboratory dish and then transferring the embryo into the uterus. In addition to being the procedure required for many partners of men with CF to become pregnant, IVF can be a popular option among women with CF who have a difficult time getting pregnant or whose partners are found to be genetic carriers.
Before you begin the IVF process, talk to your CF care team. CF can affect the absorption of IVF-related medications and hormones if taken orally, so it is important that you are regularly taking your enzymes and that your care team is aware you are starting IVF so they can adjust your treatment plan accordingly.
Although the actual process will vary by clinic, IVF involves several key elements. Your doctor will begin by running basic tests to ensure that everything is OK regarding the sperm, the woman's estrogen levels, and the size of the ovaries. After that, the woman will start taking daily medications, typically through injection or orally, to help stimulate ovulation and increase the number of mature eggs that can be retrieved during the IVF process.
As the eggs develop, the fertility team will monitor the growth of your ovarian follicles through ultrasounds and blood tests. Depending on the results of these tests, your doctor may change the dosage of the injected follicle-stimulating hormone (FSH) medications to ensure optimal outcomes.
Finally, you will receive a “trigger shot,” or human chorionic gonadotropin (hCG), that will help trigger the maturation of your eggs so that they can be collected with a fine needle. The harvested eggs will be mixed with sperm to fertilize into embryos, which are then implanted in the uterus with a catheter.
Although the likelihood varies, the success rates for IVF are typically between 20 and 40 percent. Due to the cost and emotional stress involved in the IVF process, this can seem rather daunting. However, as noted on resolve.org, these statistics often require greater context.
To find an IVF clinic near you or to use the patient predictor tool to evaluate your own chances for IVF success, visit sart.org.
Intrauterine insemination (IUI) is an ART technique in which a catheter is used to place sperm inside a woman's uterus to facilitate fertilization. Also known as artificial insemination, IUI is intended to increase the number of sperm that reach the fallopian tubes and, therefore, the chance of pregnancy.
IUI is less invasive and expensive than IVF, but has also been shown to be less effective with a success rate between 5 and 25 percent. IUI is typically used in cases in which there is low sperm count, decreased sperm mobility, or issues with ejaculation. However, it can also be effective for treating fertility problems such as cervical scar tissue or cervical mucus that prevents the sperm from entering the uterus, which can sometimes cause decreased fertility in women with CF.
Before you begin IUI, it is important to talk to your CF care team, especially since IUI comes with a small risk of infection.
Although IUI can be done without the use of drugs, the woman will typically begin by taking medications to stimulate ovulation prior to the procedure. Once you have begun ovulating and the eggs are mature, your partner or donor will provide a sperm sample that is washed and concentrated by selecting only the most active, healthy sperm.
Your doctor will then use a catheter to insert the sperm into the uterus and ask that you lie down for a while after the procedure. The entire process takes only a few minutes and causes minimal discomfort, although you may experience some cramping.
If you are concerned about passing CF to your child, plan to become pregnant without a male partner, or have undergone several failed IVF attempts, using donor sperm, eggs, and embryos is a viable option for those who still wish to undergo pregnancy or carry a child. The cost and procedures will vary by clinic, but it is important to be aware of donor options and understand this possibility as you make your family planning decisions.
For more information about using donated sperm, eggs, and embryos, visit resolve.org or ask your CF care team if they can refer you to a fertility specialist. You can also learn more about choosing between using an egg donor and surrogacy.
IVF is a lengthy and often emotionally demanding process, and there is no guarantee that it will end in pregnancy. For this reason, it is important to have a support system in place to help you through the emotional, physical, and financial challenges involved in IVF.
IVF is not typically covered under health insurance and on average can cost about $12,000-$15,000 per cycle. Therefore, making sure that you are financially equipped to take on these costs is an important step toward deciding if IVF is right for you.
Cystic Fibrosis Foundation Compass can help you find resources for the cost of IVF and other financial barriers. Call 844-COMPASS (844-266-7277) Monday through Friday, 9 a.m. until 7 p.m. ET, or email firstname.lastname@example.org.
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