--- In cysticfibrosissupport@yahoogroups.com,
bugsbunny_d<no_reply@...> wrote:
>Dee,
My name is Debbie, and I just wanted to let you know that, your not
alone in this. My husband and I found out that we were CF carriers 4
months into my pregnancy, and just days before the birth of my son, we
weretold that he had CF. That was 7 months ago, and since then I
cherish every day with my son. Don't hide your daughters illness. If
anything, the little control we have over this disease, is that we can
spread the word. Educate your friends, not only about how common the
disease is,but on how they can help you keep your daughter healthy.
If people aren't aware of just how fragile your daughters lungs are,
they could be bringing germs, bacteria, and pathogens into her
environment that could be harmful to her health. Cystic Fibrosis isn't
something to be assamed of. I don't live near the Long Island area,
but I too am in NY(buffalo). If there is anything I can do, or
questions I can answer, please don't hesitate to ask. I too am new at
all of this, but any way that I can help someone else, makes this all
worth while. Good Luck, and stay positive.

Debbie
> Dear all,
>
> My daughter was diagnosed with new born screening test and since
> then she is using enzymes. Her sweat test was on the borderline. We
> are living in NY and we have nice VF team but I still have lots of
> question. What I do understand is this is like a unique illness and
> everyone may have different condition.
>
> Now I am very curious that my daughter has the mild or severe one?
> She had shown the disorder in her pancreas so does this mean the
> sooner the CF would seem the severe it will be?
>
> Our family members are all living in Europe so sometimes I feel
> myself very weak and cry all the time.. then I think a little while
> and thanks God for what I have... Now I want to visit my family and
> even for that I am scared cause it is a flu season.. getting on a
> plane, traveling etc. would be dangerous for her.. but I know that
> it is dangerous to even go to a mall too. My friends in here do not
> know that my baby has CF I am sure they may even not know about CF,
> too. I just tell everybody that her lungs are sensitive and she may
> have allergies. What I do know is I really need some support, is
> there anyone who lives in Long Island in this group?
>
> Thank you for reading my message and sorry for taking your time.
>
> With love,
>
>
> Dee
> 11 months old daughter w/cf
>