everyone has a story, here is mine:

I have Cystic Fibrosis, diagnosed at birth by Meconium Ileus (an intestinal blockage requiring surgery). Although considered healthy most of my life (with no lung involvement), I've always dealt with fatigue, digestion complications and sinus issues.

As a child it was thought I was miraculously spared the devasting effects of CF - it was believed I had a mild case of CF, and wouldn't develop the typical complications of a person with Cystic Fibrosis. Respectively, my health was taken for granted, and I wasn't taught the importance of lung maintenance.

So, when I woke up sick one January morning in 2002,
I simply thought I had the flu, and didn't feel the necessity to go the doctor. Two weeks later after no improvement, I found myself in the hospital, on I.V. antibiotics and oxygen for no less than 14 days.

Not until just recently have I come to understand that what I experienced was my first CF exacerbation, which, sadly, caused irreversible lung damage by waiting for treatment.
So much for being "healthy".

Although I tried to return to work, it proved to be too stressful, too demanding, and too exhausting.
So, that October I retired and started my "life with CF".
And here we are today....

Wednesday, May 7, 2008

May is National Cystic Fibrosis Awareness Month!!!

This has been a fantastic month of strides for Cystic Fibrosis...


Congress and the President took action on four separate bills that champion the rights and health of people with cystic fibrosis.


The Cystic Fibrosis Foundation played a hand in each of the following developments:

· The Senate officially recognized May 2008 as National Cystic Fibrosis Awareness Month.

· Congress passed the Genetic Information Nondiscrimination Act (GINA) today. This law makes it illegal for employers and insurance companies to discriminate based on genetic information.

· President Bush signed into law the Newborn Screening Saves Lives Act, which provides resources and funding for new and existing newborn screening programs through 2012.

· The House of Representatives reauthorized the Small Business Innovation Research (SBIR) program. This program awards grants to small biotechnology companies that conduct important CF research.

Each of these initiatives has tremendous potential to help people with CF. These bills help increase awareness of cystic fibrosis, focus research funding on CF, and establish critical legal protections to help people with the disease live longer, healthier lives.


Thank you CF Foundation for all your work !!! It is unmeasurable!

Posted by Sally at 4:59 PM

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