ThisWeek CW 03/29/2012
After several misdiagnoses, Canal Winchester resident Joanna Thanthanavong clung to life before being correctly diagnosed and treated for Addison’s disease, a disorder of the adrenal glands.
“I was hours from death and I’m very lucky to be here,” Joanna said. “Being sick and angry that I had this disease wasn’t helping, so I needed to do more.”
The rare disease prevents the adrenal glands from producing hormones, which can then lead to organ failure and death, according to Joanna’s husband, Vince Thanthanavong.
“Joanna went a couple years before being diagnosed correctly with Addison’s,” he said. “Her organs were failing and we were begging and pleading with the doctor. Things weren’t looking good, but by the grace of God, the doctor went the extra mile and did the extra testing, so the next morning after a treatment, she couldn’t believe how normal she felt.”
That was 2009.
During her recovery from that near-death experience, Joanna began connecting with other people diagnosed with Addison’s disease, she said, and found there wasn’t any organization specifically dedicated to the disease.
“It’s rare, so you can’t find much info, and that’s why I decided to do something about it instead of just moping,” she said.
In 2011, she started the Addison’s Disease Foundation to promote awareness of the disease and to work to find a cure.
“Finding better research is No. 1 right now,” Joanna said. “The treatment is awful but you have no choice but to take it.”
According to Joanna, 100 percent of donations to the foundation are going toward research at the University of Colorado Barbara Davis Center.
“There’s kids dying from this disease, it’s not just adults, and we need to know more about it and spread the word throughout the community,” she said.
After seeing the Jefferson Awards on WBNS-10TV last year, Vince said he thought his wife would be a deserving recipient and chose to nominate her.
“I saw the winners and the heart and soul they put behind their volunteerism. Their work was very inspiring. I nominated my wife because I feel she embodies those same values,” he said. “She’s really an inspiration to a lot of people and what makes her special is she doesn’t know how to say quit.”
The Jefferson Awards recognize individuals who do extraordinary things in their communities without expecting a reward. Local Jefferson Award nominees will be honored at a luncheon on April 5, with winners being announced on 10TV at 7 p.m., April 28.
One national winner is chosen at a ceremony held in Washington, D.C.
“I think it’s truly amazing to be nominated but I have so much more work that I want to do,” Joanna said. “I believe this is what God wants me to do with this situation, so I’m trying to fulfill His desire for me.”
The foundation raised $2,500 at its first event, according to Vince; three more events are in the works for this year.
More information about the Addison’s Disease Foundation is available online at info@addisonsdiseasefoundation.com.