An Open Letter: The Perpetual Ignorance of the Purple Ribbon


Jasmine Milliger, Let's Talk About Editor

To those who are unaware,

Cystic Fibrosis (CF) is an inherited disorder that affects the lungs, liver, pancreas, kidneys, and digestive system. CF changes the cells that produce mucus, making them produce thicker, more sticky mucus that damaged critical bodily organs and systems. Some of the short term effects include: chronic lung infections and the inability to digest any food without taking additional enzymes beforehand. The long term effects being: countless surgeries (especially lung transplants), liver disease, malnutrition and poor growth, the formation of scar tissue (fibrosis), increased susceptibility to cystic fibrosis-related diabetes mellitus (CFRDM), difficulty breathing due to mucus build up in the airways overtime, and infertility. More than 30,000 people in the United States (70,000 worldwide) have CF. Due to advances in technology and research, the predicted survival age for someone with CF is 40 whereas in the 1950s those with CF wouldn’t live past elementary school.

My younger cousin Nathaniel almost died as an infant because of his inability to eat and breath unassisted. At the time, it was not recommended to test for Cystic Fibrosis before pregnancy, so none of my family had tested for it. When Nathaniel was diagnosed with CF, my mother and grandmother both tested positive as CF carriers (meaning they carry the gene, but only have one copy from one parent, so they don’t have the disease), and would pass the mutation onto their children.

The very common Delta-508 mutation that my mother passed onto me has predictable outcomes when met with another common mutation of CF. However, the mutation that my father gave me is untraceable and extremely rare. When I was diagnosed, the CF doctors found that I was asymptomatic due to this rare mutation. Genetically, I have Cystic Fibrosis, but a very rare case that makes it seem as if I don’t. When I was diagnosed, my mutation was so rare that only three people were known to have it worldwide: me and two men who lived in Europe.

Although there is currently no known cure for Cystic Fibrosis, there are a rising number of foundations that raise money for research towards one. One prominent foundation is the Cystic Fibrosis Foundation which holds a tower climb every year. My grandmother participates in the San Antonio Tower Climb & Run which raised $168,556 last event, the second most successful climb event in the country right now.


So many lives are cut short by this ruthless genetic disease. If you wish to donate or read more about Cystic Fibrosis, visit the Cystic Fibrosis Foundation.