Cystic Fibrosis – Be Gone!

If you could create a painless, inexpensive cure for a single ailment, what would you cure and why?

Cystic Fibrosis sucks. It is true that it represents a fractional portion of the diseases in this world and a cure would not save the masses of humanity, but I want to be selfish about it. If I could cure it, my children would not have to deal with it any longer.

A brief overview from the Cystic Fibrosis Foundation web site (www.cff.org)

Cystic fibrosis (CF) is a life-threatening genetic disease that primarily affects the lungs and digestive system. An estimated 30,000 children and adults in the United States (70,000 worldwide) have CF.

In people with CF, a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

  • Clogs the lungs and leads to life-threatening lung infections.
  • Obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients.

In the 1950s, few children with CF lived to attend elementary school. Since then, tremendous progress in understanding and treating CF has led to dramatic improvements in the length and quality of life for those with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

When my first son was born, he came out with all ten fingers, ten toes, and was beautiful to behold. Three weeks later, he was projectile vomiting and losing weight. Doctors called it a “failure to thrive” and had no diagnosis. I wrote about it on another posting here (Miracle in My Life).

My daughter was also diagnosed at birth. She was tested for it specifically because of her brother. The confirmed test was another blow to us. We spent 14 exceptional years with her good health before her body changes impacted treatment effectiveness and resulted in a cycle of repeated respiratory infections, hospitalizations, diminishing lung capacity, and reduced stamina.

Machines hum in my house multiple times each day for respiratory treatments. A soundtrack of wracking coughs and throat clearing provides the backdrop of our family home.

Their appetites have been huge for most of their lives because of the reduced nutrition absorption. We half-joked that our single-age children ate like teenagers. When they hit teenage years, it almost doubled.

Each year, the CF Foundation reports medical advancements and genetic treatments in the pipeline. We watch each one with hopeful anticipation and are repeatedly frustrated. The complexity of fixing a disease at the chromosomal level is a daunting task. The CF mutation has thousands of variations that further complicate developing a single solution for a cure.

If only…

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