What we had to do was have continual two-sided conversations about CF. It would be all too easy for me to simply spit information at him, but that would be a monologue, not a conversation. He learned about CF, bit by bit, experience after experience, one medication after another, like I did so long ago. I had to take it upon myself to give him the space and time to develop his own questions and his own concerns about CF so we could come together and discuss it.
By allowing Nick to develop his own awareness, education, and understanding of CF, we have cultivated a safe space for us both to express our concerns, feelings, and thoughts rather than just centering around my own concerns and feelings.
In a relationship with CF, it no longer is only your burden to carry, and that's what makes it beautiful and difficult at the same time. Join the conversation on Facebook. Chelsea is a year-old adult who was diagnosed with cystic fibrosis at four months of age. Despite this, her BMI remains at Fitting it all in and keeping your priorities straight is not easy. They take an active part in managing their own disease. Unlike many organizations, cystic fibrosis support groups cannot arrange events for people with the disease to get together.
This helps them avoid contracting bacteria that are adapted to cystic fibrosis lungs and resistant to antibiotics. Because they are related, Berne and Maren are an exception. The twins try to reduce cross-contamination risks by not sharing utensils and avoiding close contact while sick.
When both parents carry a recessive cystic fibrosis gene, there is a one in four chance that their child will get the disease. For fraternal twins to both get it, there is a one in 16 chance. Cross-infection at events Meetings and conferences are places where cross-infection could occur, so even at cystic fibrosis-related events, or events organised by the Cystic Fibrosis Trust, there should only be one person with CF in attendance at a time.
Start talking. CF Connect. Reach out. Find support. We are fighters, and praying together for a cure for our illness all invisible and visible illnesses. Or just to find a break in this life. It will come. Keep the faith.
God chose us for a reason. Excellent read. Thank you so much for sharing, and I am so sorry for what you surely must be going through. There is a wide range of clinical manifestations and disease severity among the CF community based on many factors, some of which we understand and others that we do not yet understand. Save my name, email, and website in this browser for the next time I comment.
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