May is Cystic Fibrosis awareness month. Fingers crossed that we can spread the message! CF is a progressive, terminal, recessive genetic disease; meaning those of us with CF were born with it by inheriting a defective CFTR gene from both parents. This causes a thick, sticky buildup of mucus in the lungs, pancreas, and other organs. As a result, we spend hours a day doing breathing treatments and airway clearance and most of us, including myself, have to take enzymes and supplements when we eat to be able to digest food and absorb calories and nutrients. These treatments also often include hospital stays and IVs during exacerbations. In the lungs, the mucus we produce clogs the airways and traps bacteria leading to infections, extensive lung damage, and eventually respiratory failure which is what causes our shortened life expectancy. Only 30,000 people in the United States and 70,000 people worldwide have CF making it very rare. In the 1950s, children with CF rarely lived long enough to start kindergarten. When I was born, in 1992, the life expectancy for CFers was around 16 years of age. Today, the median life expectancy for CFers in the United States is almost 37 years! In Canada, the UK, and Europe the life expectancy is even better at around 46.5 years! It’s awesome that we are now living long enough to achieve adulthood, however CF is all consuming and unpredictable and often a full time job so it is hard to maintain a normal balance. As hard as it may be to see past it those of us with CF are so much more than CF! This month I will do my best to show you the bad and the ugly of life with CF, but I will also do my best to show you the beautiful life that can come out of the resiliency and strength that CF teaches us. #vegansofig #vegansofinstagram #veganism #vegangirl #veganpower #smallyoutube #smallyoutubersupport #smallyoutubercommunity #smallyoutubechannel #veganyoutuber #veganyoutube #KCVPHOTO #cysticfibrosis #chronicillness #anxiety #motivation #inspire #friends #cf #cysters #cfer #CFlife #cfawareness #cysticfibrosisawareness #invisibleillness https://www.instagram.com/p/Bw8wzOWAqs6/?utm_source=ig_tumblr_share&igshid=1vdinmlrw8adc
