May is 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 a serious genetic disease and raise money for research toward a cure.
Cystic Fibrosis is a genetic disease most commonly recognized for affecting the lungs, but it affects many other parts of the body as well, specifically the pancreas and the reproductive system in men. The disease causes mutations in the body 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, ad infections. People with cystic fibrosis are at a high risk for all kinds of infections, particularly respiratory infections, due to a weakened immune system, and must be especially cautious to avoid germs at all costs, making everyday life riskier and more difficult for them. In the pancreas, the mucus buildup blocks the release of enzymes that assist with absorption of nutrients that are essential for growth and survival. The disease can harm the liver in a similar way, causing reduced liver function or even liver failure.
Since cystic fibrosis is a genetic disease, it is never known for certain whether parents who carry the gene mutations will have a child with Cystic Fibrosis. Genetic testing can help determine whether parents are a carrier, but since there are many variations of the genetic mutation, common testing mechanisms may not identify the particular mutation an individual has. Testing to determine if an individual actually has Cystic Fibrosis is a multi-step process, and can take some time to confirm the diagnosis. Because of difficulties with testing, and the inability to know whether a child will be born with Cystic Fibrosis simply due to the parents’ carrier status, developing effective treatments, and ultimately a cure, is a primary and essential goal for the disease.
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 to live longer and healthier lives, until a cure can be found
Bringing awareness to Cystic Fibrosis is important for a number of reasons. Since Cystic Fibrosis is a rare but devastating disease, many individuals with CF may feel like they are alone and that others cannot understand their condition or needs. Misconceptions remain about CF, including that it is contagious, which is not true. Constant coughing, wheezing and difficulty breathing, stunted growth, and needing to take pills and breathing treatments multiple times per day can cause others to assume the individual is contagious or very ill, leading them to avoid contact. This can be especially hard on children, who often have to miss school time and other activities to do breathing treatments or due to infections fostered by the disease, or who may have to avoid certain situations so as 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.
Another important goal of bringing awareness to Cystic Fibrosis is to help raise money for research and development of new and improved treatments and therapies, as well as searching for a cure. Great Strides in a major annual fundraising event for the Cystic Fibrosis Foundation, and is a walk to raise money for the foundation and the work that it does. There are a number of ways that 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 that they deserve.
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