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When did you first meet another person with CF?
By nature of having two sisters with CF, I have only ever known a life surrounded by others with the same disease. Outside of my family, we had a handful of friends with CF with whom we would regularly spend time. My siblings and I even went to CF summer camps! This was, of course, in a time before the dangers of cross-infection were known; prior to the implementation of the “six-foot rule.”
I remember being absolutely floored when chatting with someone online who revealed that they had never before spoken with or met another person with CF – I was their first! When I speak with parents of children with CF and they learn that we used to spend time together more freely, I think they are both intrigued and a bit horrified by the thought.
I’m curious to know what your experiences have been. Do you remember the first time you met someone else with CF? Did you ever attend CF camp or share hospital rooms with other CF patients? What have your interactions been like with others in the CF community?
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4 Replies
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I have 3 children and 2 of them with Cystic Fibrosis. I first met someone with CF when my eldest was diagnosed with CF at 15 months old. We became great friends with the whole family and spend many weekends at their house and them at ours. Even giving their son (now passed away) only months before he died, his wish to go camping, riding motorbikes, pig hunting and fishing. He was like my kids big brother. (10 years difference)!!! He had all sorts of serious bad bacterias that never passed across to my girls with CF and my girls are still living today. We used to mingle those days. Now they cannot mingle. Not sure of the 6 feet apart rule is for the betterment of the mental well-being for the CF’s t not be able to talk in person and help each other through.
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Wow, Kerry, this is similar to my own family’s experience. We were very good friends with another family with 2 children with CF in their family. We also maintained a decades-long friendship with an adult with CF who was a former camp counselor of ours at CF camp. Even after we moved out of state, he stayed with us at our house when he’d come visit. It was only years after his death that I realized he cultured some very aggressive scary bacteria that we simply didn’t understand the risks of at that point. I know there is reason for the precautions we take now, but I sure do miss those earlier days when CF friendships were “allowed.” I hope your girls are doing well today!
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I was diagnosed a little later than the CF camps, so I never had that experience. I know I grew up (and still kinda am) paranoid of cross contamination, so I veered far away from CF’ers. BUT, my first best friend with CF went to high school with me — so we waved from a distance when we saw each other!
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The first and last person I met with CF that was my age was when I was a small child. I don’t remember his name, but I do remember playing Super Mario Brothers on the Super Nintendo in my doctor’s waiting room! Also, the very first doctor I had had CF. I was too small to remember him.
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