National Cystic Fibrosis Awareness Month
May is National Cystic Fibrosis Awareness Month. This dedication to the awareness of Cystic Fibrosis has been recognized since the mid-1990s and helps bring awareness to this serious genetic disease and helps raise money for research toward a cure.
Cystic Fibrosis is a genetic disease well-known for affecting the lungs, but it affects many other parts of the body as well, including the pancreas and the reproductive system in men. The disease causes mutations which prevent an essential protein to stop functioning, resulting in thick, sticky mucus attaching to organ membranes. In the lungs, this mucus clogs the airways and causes bacteria and other germs to become trapped, leading to severe respiratory distress, inflammation and infections. People with Cystic Fibrosis are also at a high risk for all kinds of infections due to a weakened immune system, and they must be especially cautious about germs and good hygiene. This makes everyday life riskier and more difficult for those with Cystic Fibrosis. In the pancreas, the mucus buildup blocks the release of enzymes that assist with absorption of nutrients essential for growth and survival. The disease can harm the liver in a similar way, causing reduced liver function or even liver failure.
Bringing awareness to Cystic Fibrosis is important for a number of reasons. Since Cystic Fibrosis is a rare but devastating disease, many individuals with Cystic Fibrosis may feel like their diagnosis and needs are misunderstood. Misconceptions remain about CF, including that it is contagious, which is not true. This can be especially hard on children with Cystic Fibrosis, who often have to miss school time and other activities to do breathing treatments or recover from infections, or who may have to avoid certain situations to stay safe from germs that would not seriously affect another child. Understanding the disease and what a person with Cystic Fibrosis goes through to manage their disease helps foster compassion, inclusivity and creating safe environments for a person with CF to enjoy a more normal lifestyle. People with Cystic Fibrosis accomplish so many things we may not expect them to be able to do. They run marathons and participate in many different sports and physical activities and are often champions for the cause of Cystic Fibrosis awareness and fundraising, using their knowledge, experience and personal achievements to help educate others about the disease.
Raising money for research and development of new and improved treatments and therapies, as well as searching for a cure, is another important goal of Cystic Fibrosis Awareness Month. While the prognosis for individuals diagnosed with Cystic Fibrosis is much better than it was even a decade ago, there is still much work to be done. Treatments for the disease are intense and costly. Patients typically require breathing treatments daily, often multiple times per day, pancreatic enzyme support through daily medication regimens, regular medical monitoring and specialized plans and other consistent therapies and treatments. Individuals with Cystic Fibrosis may also be candidates for organ transplants, particularly lung transplants. Finding new treatments and therapies, as well as ways to reduce the costs of available treatments and therapies, is necessary to help all people with Cystic Fibrosis live longer and healthier lives until a cure can be found. Great Strides is a major annual fundraising event for the Cystic Fibrosis Foundation and is a walk to raise money for the foundation and the work it does. There are a number of ways you can get involved in bringing awareness to this disease, supporting individuals with Cystic Fibrosis, and raising money. Visit https://www.cff.org/Get-Involved/ for more information on how you can support those with CF, get involved in fundraisers and events and donate. You can also register as an organ donor. With increased knowledge, compassion and awareness, we can all contribute to fighting this devastating disease and help people with Cystic Fibrosis feel supported and included and live the healthy and happy lives they deserve.