How well I remember when my first child was diagnosed
with hemophilia. He was almost 2 months old, there was no family
history. The thoughts that ran through my mind ranged from disbelief
to anger in a matter of just a few minutes. That was 35 years
ago. Today, having parented two boys with severe hemophilia A,
I am a seasoned veteran. I have experienced the worst and the
best and I am still able to laugh and express thanks each and
every day. How did I do it? Education. I learned, and am still
learning, all I could about hemophilia, from heredity and treatment
to reimbursement and the lack there of. I classify myself as somewhat
of an expert while still acknowledging that I have a lot left
to learn! I live by the premise that knowledge is power and power
provides one with control. Take these in the right combination
and a family can enjoy a normal and happy life. What is normal?
Webster's dictionary defines it as “regular, standard, usual”.
So, our lives, although complicated by an unsolicited caller,
are normal by our standards... are there any others?
O.K., that’s enough about
me. Got questions? Grab your mouse and start surfing. If you don’t
find it here, try the links we have provided. Still can’t
find it? Send us an email - we will respond within 48 hours.
