Wednesday, September 21, 2011

PF Awareness Week

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You may never have heard of pulmonary fibrosis, but we’d like to see that change.  PF is a disease that has no approved treatment, no cure, and is fatal.  It generally takes life within 5 to 7 years of the diagnosis, and while there are some drugs being administered to victims, none are life-saving.  The best doctors can do is prolong life, not save it.

I have PF, and statistically, I am dead.  Because I have never smoked, never drank, used my lungs in ways that strengthened them in my youth (swimming, singing, being active), I am still alive.  I have participated in several studies.  I am on the lung transplant list, but am considered high risk. My heart has taken a great deal of damage in keeping me alive with lungs deteriorating inside me.  Eventually, if no break-through comes, I will choke to death as my lungs die.

We are about the same in number as breast cancer in diagnosis.  On average, five people per hour die of PF.

This past summer I began to see the disease gaining serious ground, and I know that my time will begin to be more perilously shortened in the coming months, maybe years (if I am lucky).  I rely on oxygen more often.  I have issues with related health crises.  I’m slowing down.

Every day is a gift, but spreading the word can help others who have more time.  As research gains ground, it may even save a few of us on the back end of PF.  I ask, during this week dedicated to spreading the word, not for donations, pity, or exertion on our behalf.  I ask simply that everyone become aware.  We’re out here, counting each breath, looking for hope.  Should you become inspired enough to contact a politician in your area, or to join a fund-raising effort, that would be a blessing, too.

And prayers… well, those are always welcome.

Thank you, Representative Paulsen!

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