Learning that your child has cystic fibrosis can be overwhelming. You may feel sad, guilty, scared, or even angry, but you are not alone. We are here to help.
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If you're the parent of a child with cystic fibrosis, you probably know the worry that comes along with sending your kid away to summer camp. To ensure that my own kids with CF were cared for at camp, I wrote the following letter outlining their special medical needs.
Our community's shared journey makes us unique and unites us in the hardest of times for some and the most hopeful for others.
Although not part of my son's “official” care team, our local pharmacist plays a key role in his cystic fibrosis care.
By learning about the implications of all transplant-related medications and treatments before undergoing a transplant, men with cystic fibrosis can avoid some of the harmful reproductive side effects and improve their ability to have biological children post-transplant.
Sex and relationships are essential parts of life. For some people with CF, making the distinction between sexuality and intimacy can be an important step in navigating the ups and downs of having a chronic illness.
For some people with CF, having sex can come with physical discomfort, aggravations and pain. Fortunately, some practical tips and advice can help both men and women with CF fully enjoy their sex lives.
There are no easy remedies for the perpetual dance that the parents of a chronically ill child do to deal with the painful and enduring isolation. And personally, I found a sense of hopeless defeat.
Cystic fibrosis can't take living away, especially when one loves life!
When my 8-year-old daughter with CF found out that the disease is potentially fatal, I was grateful for her optimistic views on life and death. But deep down, I was saddened with the thought of a cure being so far away that I wouldn't be around to see it. Today, my fears have dwindled.