Explaining a Diagnosis of Cystic Fibrosis to Friends and FamilyPosted on January 10, 2018

Explaining a Diagnosis of Cystic Fibrosis

When my husband and I first found out that our son Joey had cystic fibrosis, telling others was the last thing on our minds and we kept the diagnosis fairly private. As we learned more about CF and how it affected Joey, we soon realized that we needed to tell our friends and family, at least the ones we were close to.

Joey was too young to talk, so of course my husband and I were his voice. We began opening up and sharing Joey’s story with our close circle of friends and family, although we didn’t feel the need to go through our address book and start calling everyone we knew. Whenever we saw a family member or got together with friends, we would share our story and even though it felt good to be open with others about our CF struggles, I always worried that it may cause people to pity us or treat Joey differently, which I didn’t want.  

It can be sad and difficult to open up about a fatal lung disease when the life expectancy of your child is 37 years old, I think most people would feel sorry for us if they heard that. So I made sure to let others know that even though Joey has cystic fibrosis, he is just like any other child and can do anything normal child can. The only difference is he takes medications and breathing treatments throughout the day. I would also explain that if Joey catches a cold it can be a little worse than an average child catching a cold. I made sure to let my playdate groups know that if they have any children with stuffy noses we would just skip the play date, no big deal. Thankfully all my mommy friends would let me know when their kids were sick. Even if it was the smallest cough, they were considerate enough to let me know and then I could decide if we should go or not. We also made sure to let Joey’s school and teachers knew. I try my hardest to keep Joey healthy and a big part of that is making sure there aren’t any children around him who are sick or who have cystic fibrosis.

When Joey was in preschool, I would have his teachers contact me if someone else in the class was sick so that I could come pick him up. Since then I’ve kind of let that go because by the time I would pick him up from school I figure he may have already touched something the other child touched and caught whatever the other child had. I have learned that I can’t always prevent every sickness, no matter what measures I take.  

Since very few people know what Cystic Fibrosis is, I appreciate the opportunity to educate others about this disease and to help raise awareness in the community. I figure that the more awareness for this disease, the more funds that will be raised to find a cure. I shared the news of Joey’s disease more in the beginning when he was first diagnosed. Now, four years later, I am not having those conversations as often because everyone that needs to know, already does at this point. The only new people I share his disease with are his teachers and any new friend’s he meets along the way.

 

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