My cousin Stacy was born in 1986, when I was 2 years old. She was diagnosed with Cystic Fibrosis (“CF”) shortly thereafter. CF is a progressive genetic disease that causes persistent lung infections, thick mucus, and problems with the absorption of nutrients from food. Symptoms vary from patient to patient. Doctors told my aunt and uncle to take Stacy home, to love her, and to know that she would probably not live past 18. In 1989, the gene that causes CF was identified. Since then, CF researchers have developed gene therapies, aerosolized medications, airway clearance devices, and more. The life expectancy of CF patients has gone from 18 to around 44. CF was redesignated as a young adult disease after years of being a child’s disease, with 2015 being the first year that more than half of the CF population was 18 or over. With patients living longer, adults with CF need to deal with a new assortment of issues such as CF related diabetes, infertility, and resistance to antibiotics.
I’m happy to say that Stacy is now 35 years old, living her best life with a loving husband and amazing 2 year old son. She is a college graduate and an accomplished professional. Stacy has two “nonsense mutations” which put her in the minority of the people with CF who have not benefited the same way from newer medications. More work is needed to help her and others like her.
The CF Foundation and its supporters have made all of this a reality. CF is an orphan disease, with no funding for research coming from the government. The CF Foundation is responsible for almost all of the currently available CF medications. Donors are directly responsible for these amazing discoveries and advancements. You can make a difference in Stacy’s life by donating today.