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Monday, May 6, 2013

Cystic Fibrosis Awareness Month

I recently learned May is Cystic Fibrosis Awareness Month. Cystic Fibrosis (CF) is a genetic disease that affects the lungs and digestive system, specifically the pancreas, with build-up of abnormally thick mucus. Because of this build-up, CF patients are prone to multiple and severe lung infections, as well as the inability to properly digest and absorb nutrients from food.

Well, a close family friend, Jamina "Lil' J" Winston, has CF and in January, had a terrifying experience while visiting New York City. I received a frantic call from my sister saying she was flying out to NYC and let me know Jamina was in the hospital and it didn't look good. I am about 2.5 hours away from the city, so I told my bosses that I would likely be disappearing for a few days (I am very lucky to have the supportive network here that I do). 

Cystic Fibrosis Foundation Great Strides Walk 2009
My sister is the pink one (fundraiser) with Jamina kneeling just behind her left shoulder.
After a few scares and crashes, Jamina was able to communicate via notepad (she was on a ventilator and unable to talk). Even though she had been close to death for a week, down to 65 pounds, and filled with tubes, she was still able to crack jokes and (silently) laugh while I was with her. Amazingly, her sense of sarcasm was still evident in her writing and body language. To illustrate just how amazing of a person she is, Breaking Muscle had an article on Jamina and her battle to continue swimming with CF. 


Lil' J in her full hospital get up, yet still chipper.
Now time for the good news. This past weekend, Jamina received a double lung transplant and within 24 hours, she was off the ventilator, sitting up in her chair, and able to walk. This is an exciting, but expensive, development for Lil' J, as her main caregiver (her mother) had to leave her job to move closer to the Duke medical facilities (one of the top CF/lung transplant facilities in the country).

I believe we will find an answer for cystic fibrosis in my lifetime, however this will not happen without increased awareness throughout the public. Please take the time to visit the Cystic Fibrosis Foundation website and Jamina's fundraising site to help cover medical expenses, and help spread the information available. I am not asking for anything more than your time to learn more about this disease. Everyone has a cause they fight for, and this is mine.

If you are able to help support Jamina and her medical expenses, please visit her donation page here. If you would like to donate to the CF Foundation, you can contribute to the 2013 Cystic Fibrosis Foundation's Great Strides Walk. Please share this post with family, friends, coworkers, and as many people as you feel would be interested in learning about it. I appreciate your time and interest in this matter.


All the best,

Drew Henley, CSCS, USAW, CES




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