Help Gina celebrate 13 years post double lung transplant by donating to her efforts to ride 33 miles with the LAM Easy Breathers Team to fund research to find a cure for LAM. The Penn Medicine Orphan Disease Center will host the 3rd Annual Million Dollar Bike Ride on Saturday, May 7th, 2016 to raise money for rare disease research.
I Have LAM
I'm Gina Lorenzen and I was 35 years old in 1991 when I was diagnosed with lymphangioleiomatosis (LAM) a rare and fatal lung disease that strikes young women in their prime. LAM was rare, they said, only 100 known cases, no known treatment, no cure, and survival was about 10 years from diagnosis. Lung transplant could be a "last resort."
Devastated, I felt my life was over, even though I had a young son, a talented husband and a promising career. I continued to work, but it was getting harder and harder to breathe, and to cope.
Then in 1995, Sue Byrnes started The LAM Foundation promising "A Breath of Hope," for the few of us who were unlucky enough to have this fatal diagnosis. Through the foundation, I became involved in clinical research on LAM at the National Institutes of Health. Finally, there was HOPE.
Nevertheless, my disease continued to progress and by 2000, I accepted the inevitable and was listed for transplant. It was a long 41-month wait, but on September 3, 2003 I got a second chance at life as a successful recipient of a double lung transplant. I was happy to donate my diseased lungs to the NIH to further understanding of LAM and I continue to participate in LAM research however I can.
This year, on March 2, 2016, I will celebrate my 60th birthday! (which is pretty amazing because I didn't think I would see 50!) I continue to do well 25 years after my diagnosis and 13 years post transplant, thanks in no small part to the doctors and scientists who have guided me along the way.
