By Karen Billing
Few people may know that Graves’ disease is one of the most common autoimmune diseases afflicting Americans today. Fewer still may know that the only national non-profit dedicated to its patients is headquartered in Rancho Santa Fe.
The Graves’ Disease and Thyroid Foundation, co-chaired by Rancho Santa Fe residents Kathleen Bell Flynn and Steve Flynn, has been located in their La Flecha office for the last three years.
The Flynns have been involved in the foundation for the past 10 years, after Kathleen was diagnosed with the disease that attacks the thyroid gland.
“Every donation counts,” Kathleen said, noting that they are careful in how their funds are distributed and fortunate that the organization is meeting all their needs -— educating and supporting patients and their families -— but they really need to do more to find the resources to help advance research.
With Graves’ disease, the immune system attacks the body’s own cells and organs and can cause symptoms of hyperthyroidism such as fatigue, rapid and irregular heartbeat, anxiety and irritability, mood swings, and an enlarged thyroid that can interfere with normal breathing or swallowing.
Graves’ can also occasionally affect the skin of the lower leg and the tissues around the eyes. Swelling of the soft tissues around the eyes can cause eyes to bulge and eyelids to retract.
Well-known people with Graves’ include George Bush Sr. and Barbara Bush, actress Maggie Smith and Faith Ford and musicians Sia and Missy “Misdemeanor” Elliott.
There is no cure, but options for treatment include radiation, medication and “hope for remission,” or having the thyroid removed and taking hormone replacements.
“It’s hard for people who don’t have it to understand,” said Steve. “It’s one of those invisible diseases that can cause a host of problems. The person doesn’t look sick, but they are.”
The Graves’ Disease and Thyroid Foundation was founded in 1990, but the Flynns took over its administrative functions about three years ago. The executive director is in Phoenix, but Rancho Santa Fe is in charge of the organization’s day-to-day functions.
When Kathleen was diagnosed 10 years ago, right before she was to take her pilot’s license check ride, she didn’t know anything about Graves’.
As part of her symptoms she had been very hyper, always feeling as though she had drunk a lot of coffee.
“There was a honeymoon period when I was getting so much done,” Kathleen said of her high energy level.
Kathleen was diagnosed with Graves’ after experiencing a “thyroid storm” in which her heart was racing, she was extremely weak and her metabolism had speeded up to a dangerous point.
She tried to do research online about Graves’, but found little in the way of patient-centric organizations and information.
“We saw that the GDATF needed a board, money and guidance, so we just got in there and got involved,” Kathleen said.
Added Steve, “Anyone who has Graves’, we want to get them the help they need, and it shouldn’t be so hard to find.”
With GDATF, they provide education and support, producing an informative newsletter as well as coordinating conferences and seminars across the country. The conferences are perhaps their most important offering to patients, Steve said, as people have so many questions and there are not a lot of answers.
“At the conferences, you really get validation from others and realize that you’re not nuts, you’ve just been going through a lot — and that really goes a long way,” Kathleen said.
Steve said one Graves’ patient likened it having been in a dark room and the light finally came on.
The message the Flynns want to send is a positive and uplifting one, taking a cue from Graves’ patient Michaela Cui, who started the Greater Than Graves’ movement. Cui has organized events such as a 3,000-mile bike ride from Alaska to San Francisco to raise funds and awareness.
Recently the GDATF newsletter shared Cui’s skydiving adventure, which wouldn’t have been possible without a corrective surgery for her strabismus, a condition in which the eyes aren’t properly aligned. They want to highlight other Greater Than Graves’ feats and provide hope and encouragement to patients.
“I want people to know that there’s help out there, and most people will return to normal over time with proper treatment,” Kathleen said.
GDATF has assembled a strong leadership board and medical advisory board, which includes Dr. Don Kikkawa from the Shiley Eye Center at UC San Diego, which specializes in a custom, intricate surgery for Graves’ patients.
“The eye issues can be disfiguring, where people can’t even close their eyes while they are sleeping,” Kathleen said. “We’re very lucky to have Shiley Eye Center in San Diego. They are fantastic.”
One of their newest board members is Carla DiMare, also the president of the Rancho Santa Fe Senior Center. DiMare said she is proud to be a part of the only organization that provides support and a better quality of life for people around the country.
“I wouldn’t change my diagnosis and the people I’ve met. I wouldn’t change a thing,” said Kathleen, who opted to have her thyroid removed and is managing her disease. She eventually did get her pilot’s license and is learning to fly helicopters.
“To be able to help all those people has been very nice and very rewarding. Graves’ was life-changing and a rude interruption. I appreciate my health and the wonderful people in my life more than ever.”
The Graves’ Disease and Thyroid Foundation will host a book signing and pumpkin sale Oct. 24, from 3-5 p.m., in the parking lot of the GDATF office at 6106 La Flecha in Rancho Santa Fe. Author and UT columnist Richard Lederer will be present and signing some of his latest works, including Monsters Unchained, Puns Spooken Here and American Trivia.
One-hundred percent of the proceeds will be donated to help support the charity.
GDATF will also be the patient organization group at the upcoming American Thyroid Association’s annual meeting in Coronado. They will host a free public health forum from 1-3 p.m. Saturday, Nov. 1, at the Hotel del Coronado with physician experts. Reservations are requested, but walk-ins are welcome. Reserve by e-mail to email@example.com. For more on the Graves’ Disease and Thyroid Foundation, visit gdatf.org.