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By Isabel Stenzel Byrnes
Cystic fibrosis (CF) remains a mystery to many. CF is a genetic lung and pancreatic disease that affects only 30,000 persons in the United States and 70,000 worldwide. This disease has evolved primarily in Western Europe, though the gene can be found in all ethnicities. Being a recessive disease, this silent gene rears its head often in more than one child in a family. CF is a one-of-a-kind disease that affects the majority of infants from birth, catapulting families into a spiral of high-maintenance respiratory treatments every single day without any breaks. CF affects everyone differently, yet generally, it causes the lungs to be clogged up with thick, infected mucus. As a result, the older a person becomes, every breath becomes a struggle. The downward slope of lung damage usually places young adults in the prime of life on supplemental oxygen and disability. Added to the lung problems are digestive discomforts that plague a person with stomach pain, malnutrition and a lifetime of taking pills with every bite of food. Added to that, many adults with CF acquire diabetes as their pancreas becomes increasingly damaged.
Great progress has been made in CF treatment since the 1980’s. While most children lived to be teenagers in the 1970’s, now the median life expectancy is 38 years. These strides are a result of CF families rallying together into one of the most organized and outspoken advocacy groups among rare-disease communities. Due to fundraising and political support, biotechnology companies have received financial incentives to research new CF medications that give people with CF deeper breaths and promises of tomorrow.
Still, while many people with CF live are hopeful and determined to live a normal life, the day-to-day effort of staying well remains real. And unfortunately, CF still is uncontrollable to many. Many people with CF face their mortality young and develop a precocious understanding of life. The lucky few are presented with an opportunity to replace their sick lungs with donor lungs in a high-risk transplant surgery.
Because CF touches the daily life of young people at the prime of their development, it has potential to impact all areas of life: personal identity, body image, mood, social connection, vocational aspirations, romantic relationships, personal expression. CF is a physical disease, but how it affects young people leads this illness to create its own culture.
As people with CF are living longer, their lung infections are being treated with stronger antibiotics. This leads to the development of more virulent and resistant bacteria in the lungs which can be transmitted between people with CF and other immune-suppressed persons. Therefore, a term ‘cross infection’ has plagued the CF community, which means that people with CF are discouraged from meeting in person or having any face-to-face contact, in the hospital, in the clinic, in educational meetings, anywhere. This isolation has devastated the need for a sense of belonging in people with CF.
Learn more about CF from our Community Partner, Cystic Fibrosis Research, Inc.
Understand the causes and symptoms of CF from our Community Partner, Boomer Esiason Foundation.
Find out about the global impact of CF from our Community Partner, Cystic Fibrosis Worldwide.
Read a general overview and statistics from Cystic Fibrosis Foundation.