Wednesday, July 12, 2006
As I Live and Breathe--an open letter on behalf of CF patients everywhere
I can't recall a time when I wasn't interested in science. In 7th grade I got to participate in my first science fair. I elected to do a poster presentation about cystic fibrosis (CF) , a topic of very personal interest. My poster described how it is inherited as a recessive gene, what parts of the body are affected by it, prevailing symptoms and known treatments for those symptoms. That poster earned a disappointing C- along with a comment from the science teacher that it didn't provide enough information. The lack of information was not because of minimal effort on my part. The scientific community had yet to discover vital details about CF.
Despite my low grade on that science fair project, my interest in science remained strong. About the same time that the human genome project was well underway and heading towards major discoveries about the CF gene, I was headed for college.
I entered the University of California Riverside and majored in environmental science. I focused mainly on air quality studies. The more I studied chemistry and atmospheric science, the clearer my path became. Even as I struggled with my health and was sometimes unable to take a full course load, everything was falling neatly into place. When I graduated I had a job waiting for me with the air quality group at a prominent consulting firm.
I consider myself extremely blessed. I have gotten to do things that were once considered an impossibility for people with CF. I am married to a wonderful man, I work a full-time job, I'm active in my church, and best of all, I'm living in an age where others with CF have reached adulthood.
Where I am today, the life I have, is no accident. It's also not the result of any spectacular ability on my part. Every step along the path to today has taken considerable effort--and I don't mean my own. The hard work of each CF specialist, pulmonologist, and researcher has made it possible for me to live well with cystic fibrosis. In my lifetime so much of the treatment of CF has been and may continue to be a lot of guesswork. Fortunately, there are brilliant doctors and scientists who live and breathe to find a cure so that I and tens of thousands of others with CF can continue to live and breathe.
I hope that no budding scientists will ever earn a C- on a school report about CF due to "lack of information." It is my hope and my prayer that someday there will be a poster or presentation about the cure for cystic fibrosis.
There are many ways you can help. If you would like to know more about cystic fibrosis or would like to assist financially with the ongoing research, please visit the Cystic Fibrosis Foundation at www.CFF.org
Hey Lauren, hope you're feeling good! I actually just posted something on my blog about the CFF, a friend and I are tring to work together to get the CFF to do some research... long road I know but hey, it's worth it.
As a teacher, I would like to give you a regrade... The work on your blog will suffice for your knowledge about CF. I give you an A+. Your ability to live life without letting cystic fibrosis rule you, further earns a "Uses time wisely" and "Puts forth maximum effort".
Love and Light,
Ms. Christy Maxwell, Teacher