Health Education: Taking Care of the Caregiver

Cindy Wilson is a mother of four. She is a grandmother of two. She is the primary caregiver for her adult daughter, Tanisha, who needs 24/7 care after a car accident left her with a severe brain injury more than a decade ago, and raised her granddaughter, too.

But what happens when the caregiver is diagnosed with an illness? Just three years into caring for her daughter and granddaughter, Cindy was diagnosed with advanced stage one emphysema due to an underdiagnosed, rare genetic disorder called Alpha-1 Antitrypsin Deficiency. Her disease progressed over the years to the point that she weighed less than 100 lbs. She couldn't walk from her house to the driveway, but she decided she could research lung transplants, and in the same spirit for which she cared for others, she began caring for herself again. Last spring she started Chicago Alphas, an alpha-1 support group where others with this genetic could come together to share, learn and grow with one another in knowledge and awareness of the disorder. Anyone with an interest in alpha-1 is welcome to attend their meetings.

Cindy created a page for herself on CarePages.com, and faithfully updated her friends and family on her life and her journey towards a transplant. Her frequent, upbeat posts inspired more than 500 visitors to live life to the fullest, and even to register to be organ donators themselves. And just eight months after being listed on the transplant list, Cindy received a new lung last October.

For Wilson, CarePages has been her support system. Reading stories from members who are faced with similar health challenges has been an incredible source of information as well as inspiration for her.

"CarePages has allowed me to learn from others, as well as be an advocate about my disease," said Wilson. "I've become good friends with so many people and it has been a wonderful, unobtrusive way to receive and give support."

She added, "Everyone is different, but it's nice to hear the kinds of things you're going to expect. It's not so scary when you're educated."

What inspires Cindy? "Watching other people who unknowingly inspire others just by living their lives is most inspiring to me. I love to witness someone reach for and hold onto an inner strength that helps them to go through and sometimes overcome completely unbearable situations, with the most wonderful, effortless smile and contentment that comes from helping someone you love," said Cindy. (Read more from a recent interview with Cindy here.)

Today, she is her healthiest in ten years, has 75 percent of predicted lung function (compared to 14 percent before the transplant). She is writing her autobiography, "Breathing Faith ," is training to participate in the World Transplant Games in 2009 in Brisbane, Australia and the U.S. Transplant Games in 2010 in Madison, Wis., and hopes to soon regain her role as caregiver, and be able to care for her daughter again in her home.

But "caregiver" is just one word to describe Cindy. Read how she describes herself and her own journey, by visiting her CarePages site, TheTransplantJourneyOfCindyWilson.