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@Jacquelinecaprio, I cannot thank you enough for sharing your story with us. It breaks my heart to hear all that your family has been though. Having to watch your children suffer has to be one of the deepest of all pains, and although I’m glad to hear your son and daughter are in a more stable condition, I understand those wounds run deep and even…
Hi @jeremic, thank you so much for taking the time to share a bit of your story with us. How incredible to be 48 years old with your original set of lungs – that is certainly something to celebrate!! We’re looking forward to getting to know you more and are glad you found our community. This is a safe space to find information and support, and we…
I was diagnosed with CF at 3 months old, so I have known all of my life that I have had it. Also, due to some things that happened in my life, I have PTSD and severe depression and bipolar.
I turned 48 this […]
Glad to hear you’re doing all right @jeremic. Thanks so much for the update and I hope you got a chance to skateboard and enjoy the outdoor weather! – Shelby, Cystic-Fibrosis.com Team Member
Almost 10 years ago our family was introduced to cystic fibrosis when our 14 year-old son, Jon was diagnosed with the disease after having several massive pancreatitis attacks.
From there many pieces of a 14 […]
I am ok today. The weather is nice outside, I might go out and ride my skateboard
Hi @grandma, thanks for reaching out! This is a great question. Both parents have to be carriers in order for the child to be affected by cystic fibrosis. Here’s some more detailed information about what it means to be a carrier if you’d like to read more – https://cystic-fibrosis.com/clinical/carrier/ Hope that helps, and thank you again for…
Shelby Comito commented on the post, Musical Chest PT for CF, or How I Bond with My Son 1 week, 5 days ago
@stephenwilson, I love how you’ve found a way to incorporate music into your son’s chest PT and making what can be a stressful experience for both child and parent a special time to bond, relax, and maybe even dance and have a little fun. Thank you so much for sharing and I can’t wait to read more of your articles!
My name is Craig Konowal, I was diagnosed at birth with cystic fibrosis. The reason the doctor’s tested me immediately is because I had a sister before me who was born with Cf and passed away. I am 30 yrs old. F […]