It is my hope that my story will both inspire and change your life

September 23, 2008

Note: The following is a supplement to the story, “Alumna raises organ-donation awareness through life story” that appeared in the Sept. 23 print edition of InsideUF.

GAINESVILLE, Fla. – Rachel Nates, a UF alumna, wrote on her Web site, “It is my hope that my story will both inspire and change your life.”

Inspiration is defined by Merriam-Webster Online Dictionary as “the act of drawing in air into the lungs.” This act was difficult for Rachel.

Rachel was diagnosed with Lymphangioleiomyomatosis in May 2007.

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 words: “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.”

After two years of breathing problems and a handful of doctors telling her she had anything from asthma to a blood clot, an emergency CT scan finally showed the real diagnosis.

“My face turned white and I almost fell over. The nurse grabbed me and put me in a chair as shock set in… I started shaking…My mom was with me…We both started to cry,” Rachel wrote on her Web site.
Almost one year later, on June 3, Rachel was put on the lung transplant list at Shands at UF.

As the days turned into weeks, Rachel was put on more oxygen and everyday things, such as making dinner or walking Harley, her long-haired Chihuahua, became exhausting.

Rachel passed away on July 21 at 4:15 p.m. Friends and family held a celebration of her life in place of a funeral.
“There was absolutely no room for negativity in her life and any challenge that crossed her path was viewed as a learning experience,” said Alexis Southcott, Rachel’s best friend. “She truly found the good in everything.”
Rachel documented her struggle through her Web site, www.rachelnates.com, blogging about her feelings and experiences in hopes to help other transplant patients. She also created the Rachel Nates Breath of Hope Foundation to, originally, raise money for her transplant. To help raise funds, Rachel created T-shirts, bags and postage stamps with sayings like “Recycle yourself. Be an organ donor.” Now, the foundation is run by family and friends, with proceeds going towards various organizations supporting the research and awareness of LAM and organ donation.

Rachel had many goals she wanted to accomplish during her life. One of her main goals was to raise awareness of LAM and organ donation, according to Southcott.

More than 250,000 women worldwide have LAM and don’t even know, according to the LAM Foundation’s Web site. The disease exclusively affects women, usually of child-bearing age and only about 1,500 cases have been identified. There is no treatment or cure for LAM.

Patients suffering from LAM hope for a transplant to make them healthy again. While 90 percent of Americans say they support donation, only 30 percent know the essential steps to take to be a donor, according to Donate Life America, an organization dedicated to educating the public about organ, eye and tissue transplants. An average of 18 people die each day from the lack of available organs for transplant.

Rachel Nates wanted to change these numbers by sharing her story with the world. Her friends and family have now taken on this responsibility and are determined to carry out her dream.

People from all over the world have contacted Brian, Rachel’s husband, since her death. They share stories with him about the inspiration Rachel’s story has left in their lives.

Southcott, Rachel’s best friend, understands how easy it is for someone to be inspired by hearing Rachel’s story.
“It was hard not to fall in love with the girl she was. She was just so genuine. Her smile was contagious,” Southcott said. “I feel so lucky to have met her.”