Hi All,
This is my second time addressing this list. My first was earlier this year , 4 months pregnant, when a weird ultrasound finding suggested that my daughter may have CF. She's now 3 months old, a healthy, beautiful, bright, happy little girl. She does have CF and we're all doing what we need to in order to keep her healthy. When we first suspected CF I came to this list and was inspired and relieved by the posts that I read, realizing that today CF is a disease that can be managed well with the focus on preventative maintenance. I wrote asking specifically about meconium ileus and received many very kind and helpful replies. Fortunately our little Mia did not end up having meconium ileus but I remain grateful to those who went out of their way to supply me with the information I was after.
My question to the list this time regards information in general. I am interested in knowing what information parents of children with CF would like to have better access to. While it seems to me that the CF treatment centers provide excellent information on CF, I wonder if there are parents out there that feel that they are not as well informed as they would like to be about any particular aspect of the disease (e.g the genetics, treatment options, nutrition (and how to feed a family with CF'ers and non-CF'ers) and daily life in general). I would appreciate any feedback.
Thanks
Lisa
Mother of Mia, 3months, w/CF
This is my second time addressing this list. My first was earlier this year , 4 months pregnant, when a weird ultrasound finding suggested that my daughter may have CF. She's now 3 months old, a healthy, beautiful, bright, happy little girl. She does have CF and we're all doing what we need to in order to keep her healthy. When we first suspected CF I came to this list and was inspired and relieved by the posts that I read, realizing that today CF is a disease that can be managed well with the focus on preventative maintenance. I wrote asking specifically about meconium ileus and received many very kind and helpful replies. Fortunately our little Mia did not end up having meconium ileus but I remain grateful to those who went out of their way to supply me with the information I was after.
My question to the list this time regards information in general. I am interested in knowing what information parents of children with CF would like to have better access to. While it seems to me that the CF treatment centers provide excellent information on CF, I wonder if there are parents out there that feel that they are not as well informed as they would like to be about any particular aspect of the disease (e.g the genetics, treatment options, nutrition (and how to feed a family with CF'ers and non-CF'ers) and daily life in general). I would appreciate any feedback.
Thanks
Lisa
Mother of Mia, 3months, w/CF