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.
You may or may not have seen the video of the woman taking her first breath as her breathing tube is removed following her lung transplant. That was my fiancée, Jennifer.
March 29, 2018
Growing Up With a Sibling Who Has CF
My Two Siblings' Enduring Legacy
The video of my fiancée has been making the rounds on countless news and social media sites all over the world in the last few weeks. Oh, and on Snapchat. That's when we hit the big time, according to Jennifer's teenage daughter. The video I'm referencing is of Jennifer and was filmed by Rob (me, her fiancé). Let us back up though and we'll get to why the video happened.
Jennifer struggled with cystic fibrosis her whole life, but wasn't diagnosed until 11 years ago when it was caught during newborn screening for her son. Although the diagnosis was scary, it answered a lot of questions. At this point her FEV1 (forced expiratory volume) was 65 percent. Fast forward to 2016, things started getting much worse. In October 2016, she was put on oxygen full-time and our lives changed. As time progressed we made decisions about our day based on how many oxygen tanks we would need and how long we had between her breathing and vest treatments.
By June 2017, Jennifer was listed for transplant and her health deteriorated further. The next few months got harder; she couldn't do a lot of things that the rest of us don't think twice about. She didn't go downstairs to tuck the kids into bed because coming back up the stairs was too difficult. Just taking a shower was exhausting; she had to stop to catch her breath and feared holding her breath for even a few seconds to wash her face. After more challenges, she was hospitalized in early October and told she would most likely be there until she received a transplant.
One morning her FEV1 tested at 10.8 percent. It's hard to describe Jennifer here without you knowing her, but to give you some perspective, I'll tell you she's the most positive and optimistic person I've ever known. Through all of this she had hope and didn't give up on the dream of a transplant that we were all so desperately depending on. That being said, it was a hope we never spoke about -- because of the potential of it never materializing.
But that all changed in an instant. We got “the call” that led to a lot of excitement and tears, calling family and friends to share the news and make preparations. With this also came somber moments. We thought about how our excitement came at a terrible price for another family who is grieving the loss of a loved one at that same time that our hopes had been realized.
Back to the video. A few days after the transplant, everything was going well and it was time to remove the breathing tube. My intention was to capture the moment on video to show Jennifer what we saw in that moment (when she was off the meds and could remember it), and hopefully share it one day with the donor family who made it possible.
Later that day, I tried to share the video with family and friends on a personal health journey website. However, you can't upload videos directly, so I had to upload it to YouTube and link to it. That was late in October and in early February of 2018 I asked Jennifer how many people she wanted to see her video. Her response was that if 10,000 people could see it then maybe some would become donors. At that point on Friday night it was climbing to 100,000 views on YouTube, and yes, I did laugh at her. Little did we know that by Saturday night it would hit 500,000 views. A week later, a Facebook story done by people we've never met would be approaching 50,000,000 views, and it is still climbing.
People have asked to buy or sell the video, but we've turned them down. As long as we are credited, we've let most people use it to share our message to spread CF awareness and the need for organ donation. Well, except for a few tabloids who asked, and we ignored them.
That brings us to now, what life is like after the transplant. I have said enough, so Jennifer is taking over and sharing her words here because she's living it:
There have been so many changes to the little things each day, like not having to plan ahead to go shopping or leave the house so we have enough oxygen tanks. I can go downstairs now to do laundry or tuck the kids into bed. Showering and getting ready without needing to sit down and catch my breath is wonderful. Not having to spend nearly all day hooked up to my vest, doing breathing treatments, or napping to survive is a major change. One of my favorite things I enjoy most is being able to truly, deeply laugh without going into a coughing fit. Speaking of coughing, my constant coughing is gone, which is odd for the people closest to me, especially my kids. My kids are excited to have a mom like they've never known before. For one, my son is excited to race me when the weather warms up. Something he's never done in his life. FYI, I intend to win!
Also, we've been engaged for over two years and now I'm healthy enough to walk down the aisle next to my dad toward the love of my life. This second chance is my miracle, but it is my donor's legacy.
Adult with CF
Jennifer is the mother of two children, and after having received a double-lung transplant, is excited to be the mother she couldn’t be before. She is thrilled to have opened her own photography studio where she can share her passion and creativity. After growing up in big cities across the south and west sides of the country, she is happily settled into small-town life in Byron, MN with the love of her life and their blended family of three kids, Abby, Rylie, and Wesley. Jennifer doesn’t have a blog but can be reached at email@example.com.
Fiancé to a woman with CF
Rob fell in love with a woman, Jennifer, who has cystic fibrosis. After many years with her and a bumpy ride through some lows and highs, including a bi-lateral lung transplant, he’s now beginning to understand CF a little bit and wants to be an advocate. He grew up in the small town of Byron, MN, where he and Jennifer live with their kids Abby, Rylie, and Wesley. He doesn’t have a blog but can be reached at firstname.lastname@example.org.
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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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