May is Cystic Fibrosis Awareness month. Although I never intended this to be a "CF Blog," I have shared quite a bit about living with CF on this blog, including losing my little sister Lexi to CF 16 years ago. CF is such a huge part of who I am and effects almost every aspect of my life. It has been a great trial but also a great blessing. The perspective to live each moment to the fullest and absolutely love and appreciate life is only one of the many gifts living with CF has given me. Yes, I get discouraged and have faced my own mortality several times in my 32 years, but I will keep fighting every day to honor my sister Lexi and to be able to raise my son and be a grandma one day! I am filled with hope and my faith gives me the strength I need to walk this road. One of our favorite sayings in the CF community is, "One day CF will stand for CURE FOUND!"
Here are a few facts about Cystic Fibrosis (CF) from the Cystic Fibrosis Foundation:
What Is Cystic Fibrosis?
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). 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; and
- obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
Symptoms of Cystic Fibrosis
People with CF can have a variety of symptoms, including:
- very salty-tasting skin;
- persistent coughing, at times with phlegm;
- frequent lung infections;
- wheezing or shortness of breath;
- poor growth/weight gain in spite of a good appetite
- About 1,000 new cases of cystic fibrosis are diagnosed each year.
- More than 70% of patients are diagnosed by age two.
- More than 45% of the CF patient population is age 18 or older.
- The predicted median age of survival for a person with CF is in the mid-30s.
Day 2 of Healthy Home Challenge:
There is a whole section on fragrance and how we need to be careful and limit our exposure to chemical fragrances. Here is a quote about one of the ways we can do that.
"Your laundry is one everyday part of your life in which you can easily eliminate unnecessary chemicals. Nontoxic, natural detergents are readily available. Reusable cloth dryer sheets or non-PVC dryer balls can be found online. At the very least you can select unscented or lightly scented mainstream laundry products."
I purchased a fragrance free/dye free laundry detergent and also purchased dryer balls to help protect us from harmful chemicals that can be found in scented detergent and dryer sheets. I loved this quote as well and will leave you with this:
"Our cotton sheets should not smell like lavender, and our jeans should not smell like mountain air unless we live in the mountains. We need to retrain our noses to appreciate the true scent of clean--which is no scent at all."