Vasculitis - a big word and a heavy diagnosis
When Emory University Hospital (EUH) cardiology nurse Jane Thomas's husband was diagnosed with vasculitis, she didn't know what to expect. But, in the 13 years since, she and her husband have donated their time to support and educate others on this distressing disease.
What is vasculitis?
According to the Vasculitis Foundation Web site, vasculitis is "an inflammation of the blood vessels, arteries, veins or capillaries. When such inflammation occurs, it causes changes in the walls of blood vessels, such as weakening and narrowing, which can progress to the point of blood vessel blockage." While 85 percent of patients are above the age of 19, vasculitis reportedly affects people ranging from five to 91 years old. And, because of the rarity of vasculitic diseases, it is often hard to recognize the symptoms.
Joe Thomas's story
In 1996, Jane Thomas's husband, Joe Thomas, visited the doctor. Joe was complaining of lethargy, migratory joint pains, symptoms of an upper respiratory virus and a "clogged, full-feeling" ear. Many short-term medications and an ear surgery later, he was still very ill. After a trip to the emergency room brought on by severe chest pains, the doctors recognized his collection of symptoms as those of Wegener's Granulomatosis, a version of vasculitis that, if untreated, has a 100-percent mortality rate. Luckily, Joe Thomas was treated quickly and, after battling "flares" of the disease that affected his lungs and kidneys for eight years, has not had a flare of the disease in the past five. Instead, he remains in remission on medications, including steroids and immunosuppressants.
Road to recovery
After the initial two years of fighting the disease, Joe and Jane Thomas decided to join the Vasculitis Foundation (VF). The foundation not only helps raise awareness around the community for the 15 vasculitic diseases, but also serves as a support group for patients and their families. Meetings of about 25 people are held four times a year at EUH to allow patients to share their stories, learn more about living with vasculitis from local medical experts and plan events. Recently, VF sponsored an event at EUH - complete with a silent auction, walk for the cause, food and prizes. More than 50 people attended and the group raised more than $2,500. In addition, Georgia Governor Sonny Perdue expressed his support for the foundation by naming May 3-9 "Vasculitis Awareness Week" in Georgia. Jane said, "We had a great time raising awareness about these devastating diseases, sharing stories of our vasculitis journey, and raising money to fund research and outreach by the VF."
The Thomases are thankful for all the support they have received over the years and want to provide the same support to other victims of vasculitis. They decided to become area contacts for the VF 11 years ago when they first joined the VF and enjoy helping people around the Southeast find resources and support to fight the disease. The Georgia chapter of the foundation had its first meeting April 2008 and has since had more than 125 people within a 100-mile radius of EUH contact them looking for doctor referrals, information and general support. Jane often refers people to her husband's doctor, Jonathan Waltuck, as well as another physician, Cornelia Weyand. Both are in the department of rheumatology at Emory Healthcare and are experienced with vasculitis. Weyand has been a great supporter of the local VF chapter and has recently been granted $100,000 from the group to study Giant Cell Arteritis.
In one month alone, Jane Thomas met two patients at Emory diagnosed with the same disease as her husband. Because of her personal experience, she was able to help these patients and their families through the diagnosis. Even through tough times, Jane Thomas keeps a positive outlook. She said, "I certainly wouldn't wish this diagnosis on my husband, but it has opened doors for reaching out to others who I never would have known."
Information from: www.vasculitisfoundation.org
