Cystic Fibrosis is not an illness that seems to be talked about a lot, despite it being one of the most common genetic diseases in the world. You’ve probably only heard of it in passing during your biology class, or if you know someone who suffers from it.
For the people in my life, they know of it because I am that person who suffers from it.
Cystic Fibrosis is a genetic disorder that mainly affects the lungs but ultimately leads to affecting the whole body, including the pancreas, liver, kidneys, stomach and intestine. Symptoms of C.F. include difficulty breathing, mucas build up in the lungs and other internal organs, delayed growth, C.F. related diabetes and much more.
I was diagnosed with C.F. at the age of three. There is no known history of the disease in my family and I am currently the only family member who has been diagnosed.
It has been a long journey these past fourteen years since my diagnosis, and it will continue to be until my journey comes to an end.
Unlike cancer, or certain other diseases in our world, there is no remission or cure for Cystic Fibrosis. There are medications that can help prolong my life, and stronger medication for when I’m really sick, but there is nothing that can cure it completely or even give me a break. It’s a never-ending cycle of doctors, appointments, hospitalizations, second opinions, nurses, antibiotics, respiratory therapists, medications, surgeries, bronchoscopies, etc. etc. Then, after the required two-week protocol stay at the hospital, I get to go home for a couple of weeks, or months if I’m lucky, and get a little taste of normalcy while still taking lots of medication and doing airway clearence treatments every couple of hours. It’s nice when it lasts, but then the reality of C.F. sets in and the cycle starts all over again.
Cystic Fibrosis has made incredible progress throughout the years though. In 1938, when Cystic Fibrosis was first described, a child would never live past there first year of life. In 1980 the average life expectancy averaged up to ten, in 1990 it continued to increase up to eighteen. Then in the mid 2000’s, thanks to lung transplant becoming a more advanced surgery and better anti-rejection medications being discovered to pair with it, the average life expectancy bumped up to thirty-four.
Another major accomplishment that was made just two years ago was that for the first time ever 50% of Cystic Fibrosis patients were either eighteen or older. Pretty incredible being that just twenty-plus years ago eighteen was the maximum age a C.F. patient would reach.
Cystic Fibrosis has come a long way, but still has very far to go. It’s a disease that needs to become more easily recognizable and become common knowledge among our general population, it needs accurate representation in the media and especially, like every other chronic illness in our world, needs more recognition and dedication from our government.
Since it is Cystic Fibrosis awareness month, my advice to you would be:
- Educate yourself.
- Read personal stories from people who have Cystic Fibrosis, there are many blogs out there on the internet.
- Ask Questions! Never be afraid to ask me, or anyone with C.F. questions, I would rather have you be curious than scared.
- Lastly, if you are feeling very generous, you can donate to the Cystic Fibrosis Foundation. The C.F. foundation is dedicated to help cure C.F., help C.F. patients to lead the fullest lives possible, and to make sure they get the best care they can get. You are more than welcome to donate here.
