Rare Disease Day

Today was Rare Disease Day. A disease is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. Cystic fibrosis affects approximately 30,000 people in the US. Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. It causes the production of abnormally thick mucus, leading to the blockage of the pancreatic ducts, the intestines, the bronchi and often resulting in respiratory infections. 

Bethany has cystic fibrosis and was diagnosed as a baby as a result of the newborn screening done in the hospital. We then had Bethany tested at our local CF clinic and she came back positive. I had no idea at that time what was involved and how many hours we would spend every single day on treatments. But, she has done so well and we are so thankful. We are blessed.