I’m not just a fitness professional.
I’m not just a body positive influencer.
I’m not just a woman.
I’m not just a mother.
I’m a mother to my daughter who was born with, lives with and suffers from Cystic Fibrosis.
Learning about her genetic disease only a few days after bringing her home was the most devastating, heartbreaking, saddest, surreal, confusing, angriest, day of my life.
How could this be? I was so ignorant to Cystic Fibrosis but that day I learned it is a life- long genetic degenerative disease with no cure. My baby. My little girl.
What is CF?
Cystic Fibrosis is a disease that causes a buildup of thick, sticky mucus in the lungs, which over time, creates on going infections making it hard to breathe over time. Mucus build up also infects the pancreas making it hard to digest food and maintain a healthy weight.
CF is extremely complex with almost 2,000 different mutations making individuals experience the disease differently.
There are over 30,000 cases in the US alone, and more than 70,000 cases globally.
Decades ago, a child with CF would not live past the age of 5. Now, the life expectancy is mid 40s for adults.
There is no cure, as of now, but we are hopeful of the medical advancements that are helping patients live a “normal” life.
- People with CF cannot be\ within 5-6 feet apart from each other as they can easily infect each other. In fact, people with CF must maintain their distance from anyone who just has the common cold as they are a greater, more dangerous risk worsening symptoms and declining lung function.
- People with CF cannot maintain a healthy weight which is necessary to fighting germs and infections.
- People with CF have sodium deficiencies in which a nutrition plan high in fats and salts are required.
- People who suffer the most usually undergo lung transplantation.
- Along with the obvious physical complications of the upper respiratory tract and digestive tract come mental health issues such as anxiety and depression. Anxiety and depression are not only experienced by the patients themselves but also the parents and caregivers.
As a mother, my job is to keep my daughter as infection free as possible. We perform respiratory care via nebulization and vested chest therapy treatments that last 20-30 minutes at a time every day. When she is sick, these treatments are performed multiple times a day. She takes pancreatic enzymes before every meal and every snack to ensure she absorbs and maintains her nutrition.
She takes special vitamins to ensure she is having all the vitamins and nutrients she needs. She is home schooled, so she does not catch any infections. Blood work, cultures, chest-X rays, and weight checks are all part of the process. The house must be spot less and antibacterial hand sanitizers are at every corner of every room of our home.
If another person is sick, our daughter is out of sight!
This is our life with Cystic Fibrosis.