Alumna raises organ-donation awareness through life story
Rachel Nates, a UF graduate, took Hurley, her long-haired Chihuahua, for long walks before she was diagnosed. She used to go to work, cook dinner for her husband, Brian, and laugh until she cried with her best friend, Alexis Southcott.
Rachel was diagnosed with Lymphangioleiomyomatosis in May 2007, at the age of 27.
Lymphangioleiomyomatosis (pronounced lim-fan-gee-o-lyo-myo-ma-toe-sis) or LAM is a rare lung disease that results in the progressive destruction of healthy lung tissue. It prevents the lungs from providing oxygen to the rest of the body, making breathing a daily battle.
Rachel described how it felt in her own blog: “Run around the room until you get out of breath. Then put a plastic bag over your head and try to breathe. That’s what I feel like every day.”
Rachel died on July 21 at 4:15 p.m. after waiting for almost two months on the transplant list. An average of 18 Americans die each day from a lack of available organs.
One of Rachel’s main goals was to raise awareness of LAM and organ donation, according to Southcott.
More than 250,000 women worldwide have LAM while only about 1,500 cases have been identified, according to the LAM Foundation’s Web site. The disease exclusively affects women, usually of child-bearing age. There is no treatment or cure for LAM, although scientists are working to find one.
Shands at UF is one of the sites participating in the first clinical trial, named the Multicenter International LAM Efficacy of Sirolimus, or MILES, trial. The UF clinical trial officially began in June and will last for two years, according to Angeline Leong, the principal investigator for the Shands at UF trial. If the trial is successful, Sirolimus, the drug being tested, would slow or halt the growth of abnormal muscle cells. The abnormal growth is the reason it is so hard for people with LAM to breathe.
Rachel documented her struggle through her Web site, www.rachelnates.com. She blogged about her own experience, in hopes of helping other transplant patients. She also created the Rachel Nates Breath of Hope Foundation to raise money for her transplant. Rachel created T-shirts, bags and postage stamps with sayings like “Recycle yourself. Be an organ donor.”
Today the Web site continues to provide Rachel’s story, and the foundation is run by family and friends. Proceeds go toward various organizations that support the research and awareness of LAM and organ donation.
Rachel’s dream lives on as she continues to be a constant inspiration to her friends and family.
“I feel so lucky to have met her,” Southcott said. “She is truly a sister of my soul.”
If interested in becoming an organ donor, visit www.donatelifeflorida.org or the national organization, www.donatelife.net.
Note: For more of this story, read the accompanying article, ‘It is my hope that my story will both inspire and change your life.’
- Claibourne Smith