Shortly after Cara was born, we found out she had cystic fibrosis. Although we heard of cystic fibrosis, we did not know much about it. In sum, it is a genetic disorder in which the body produces thicker mucus in the pancreas and lungs. The thicker mucus makes absorbing nutrients from food more difficult. Cara has to take enzymes before every meal along with a daily multi-vitamin to aid absorption. She also has to be on a higher calorie and fat diet to ensure she sufficiently gains weight.
Cara receives daily albuterol and pulmozyme treatments through a nebulizer, and we perform chest physical therapy twice a day to help keep her airways cleared. It is also extra important for her to avoid getting sick. If a person with cystic fibrosis gets sick, the mucus traps the bacteria and allows it to multiply, which can cause infections and lung damage.
There currently is no cure for cystic fibrosis. In the 1960s the average life span used to be about 10 years old. Through medical research, the median life span is now in the 40s. With your donations, the Cystic Fibrosis Foundation can increase the life span and hopefully find a cure. We would love your support to help find a cure. Below are the ways you can help.
1. If you are able to join, please participate in the virtual walk June 5.
2. You can make a donation. These donations help fund research and ways to look for a cure.
3. If you are able, please consider registering as an organ donor. Later in life, cystic fibrosis patients’ conditions can worsen and require a lung transplant. Some of them die waiting for a transplant, so please consider being an organ donor if you are not already.
Thank you for reading about Cara’s story and your support for finding a cure for Cystic Fibrosis.
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.