Growing Up With a Sibling Who Has CF

Growing up with my sister, who has cystic fibrosis, has its challenges. Although it is sometimes difficult to watch her have to miss out on the things she loves, I've been able to learn so much and connect with many other amazing family members of those with CF.

| 4 min read
Katherine-Black-Headshot
Katherine Black
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My older sister, Lauren, is 15 and was diagnosed with cystic fibrosis when she was 2 weeks old. I am 13, so CF has always been a part of my life. In our house, the daily breathing treatments and many medications are a normal part of life, as are the frequent doctors' appointments.

One of the biggest challenges of having a sibling with cystic fibrosis is when my sister is hospitalized. She has been in the hospital 10 times throughout her life, usually for at least two weeks at a time. The most difficult thing for me about Lauren's hospitalizations is not being able to hang out with my sister and see her every day. My parents also spend a lot of time going back and forth from the hospital to stay with Lauren, so I don't get to see them as often either.

Although two weeks doesn't seem very long, when my sister is in the hospital, it feels much longer. It is very hard for me to watch my sister not be able to see her friends and family, go to school, and do the things she loves, such as playing sports.

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My day-to-day life is also very different from someone who doesn't live with someone who has CF. Lauren has to take lots of time out of her day to take medicines, do treatments, and manage the many other things it takes for her to stay healthy. These crucial parts of Lauren's day are very difficult for us because it takes away from the time we can spend together.   

Between her many medications and tube feedings, Lauren's CF treatments often interfere with her time to hang out with family and friends. Although this can be challenging, it does not stop Lauren -- as she still plays a lot of sports and is involved in many activities. Lauren has always been an inspiration to me because no matter what obstacles come her way, she perseveres and stays strong.

Throughout my life, I have been able to learn so much, meet many amazing people, and help spread awareness about cystic fibrosis. I even started a fundraiser at my school for CF when I was in fifth grade, which I continued in sixth grade and will do again this year. Last year, I was invited to attend Teen Advocacy Day in Washington, D.C., where I met so many wonderful people and learned a lot about other people's views, experiences, and how they cope with having a family member with CF.

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Although there are many challenges that come with CF, the relationship that I have with my sister has only gotten stronger over the years. I am passionate about improving the treatments and medications for people with CF so that Lauren can continue to do all the things she loves to do. My ultimate goal, however, is to help find a cure for cystic fibrosis so that my sister and everyone with CF can lead full lives without any limitations.

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Katherine is 13 years old and in the seventh grade. She lives in Royersford, Penn., with her parents and 15-year-old sister, Lauren, who has CF. Katherine  is actively involved with the Cystic Fibrosis Foundation, and has helped with many CF fundraisers. She also attends the Great Strides walk every year with her family and friends. In addition to fundraising, she is a CF Foundation Teen Advocate and is passionate about making sure her sister receives the best care possible. She also enjoys acting in local theater, journaling, and traveling with her family.

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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.