I met Carmen a couple of years ago and I was completely blown away by her positivity, despite her diagnoses. It has been an incredible journey working with her on this project.
This is her story:
"My name is Carmen, and this is my journey with Cystic Fibrosis.
Cystic Fibrosis is a genetic disease that affects the lungs and the digestive system. Your body produces sticky mucus, clogging up all airways and tracts leading to chronic infections in the lungs and malnourishment of the body. The life expectancy of CF individuals are currently roaming around 40 years of age. My goal is to prove them wrong and live a life filled with adventures and happiness. To fulfill my dream in starting a family and becoming a grandma, I need some help.
Afflovest has improved CF lives incredibly by assisting us in our daily treatment regimes by shaking us left, right, up and down to get all the sticky mucus out of our lungs and minimize lung damage and exacerbations. It has been proven that an Afflovest can improve lung function by an average of 16% (https://www.afflovest.com/wp-content/uploads/2016/05/Tackett-Paper.pdf). Currently only a handful of people in South Africa own a vest - and I'm not one of them.
This is my journey in raising enough money for an Afflovest by collaborating with different individuals to make my wish come true. Take part in my campaign -CARMENBREATHES to make a difference.
The whole purpose behind launching this documentary was to show people what CF is like on a day-to-day basis. It honestly does not fathom the emotional side, but perhaps the physical aspects. I wanted to create awareness for Cystic Fibrosis in sharing my experience with it as a 21 year old. It was mostly to also encourage others with CF to live their lives to the fullest and to not let CF take over their love for life and pleasures they experience, but to incorporate it in a CF-friendly manner.
I was diagnosed with Cystic Fibrosis at the age of 13 months. Since then my life has been filled with great joy and great struggle, but CF has not determined my life, I just chose to live my life and make CF apart of it. Living every day as if it was your last definitely got a new meaning in my life. I’ve learnt to appreciate those ‘live a little’ moments more than the ordinary person I guess. It’s different seeing things as a ‘once in a lifetime experience’ than just another thing you will experience again someday perhaps. No day is just another day for me, everyday is TODAY, and so it should be for everyone. Follow my Journey as I raise funds for an Afflovest and take part in creating awareness for Cystic Fibrosis".
Video and Edit:
Coetzer Cooke/ Coetzer Photo
Oddo Bam - Sleepy Eyes
"Breathe. Until sweet air fills your lungs and fear is forgotten, you recognize the beauty of its happening and infinite days are in counting." - Carmen Crous