As Congress weighs budget appropriations, we look at long-term funding for the National Institutes of Health. We decided to sit down with the Foundation's senior vice president of research affairs to learn more about why the work being done at NIH is so important in the search for a cure for CF and other serious, rare diseases.
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Last week I travelled to D.C. to serve on a panel discussing the recent developments in precision medicine. I've got to say, it was pretty neat.
Finding out I had a terminal illness my junior year of high school was a life change I was not prepared for. And as my life and relationships change, I'm learning that the journey to acceptance never ends.
Living in Pakistan, I didn't know I had CF until I was 18 years old. After absorbing a big emotional blow, I started to fight back.
After years of being in a deep depression, one little revelation from my therapist made all the difference in how I faced the traumas in my life.
After years of health problems and a move to the U.S., I finally was diagnosed with cystic fibrosis at age 27. Once I knew about this disease, it was important to me that my family and friends -- and even my old doctor -- in the Azores know about it too.
When I was diagnosed with cystic fibrosis at age 40, I was in denial at first. Then, I compartmentalized my CF, relegating it to a small part of my life. Now I have embraced my diagnosis, and I have become a CF advocate, fundraiser, and blogger.
The recent birth of my son brought me news that I never expected -- a diagnosis of cystic fibrosis.
I can't say I was happy to get this diagnosis, but I was definitely relieved to have answers. At least I knew who I was in the ring with.
For parents of a child newly diagnosed with cystic fibrosis, it can be scary to read what's online about CF. However, I want to shed some light and positivity on what it's like to have CF. Everyone with CF is different, and it's possible for your child to lead a full life.