Learn about Dianne's experience with granulomatosis with polyangiitis.

Dianne and John on their 45th anniversary trip to Italy.

Dianne Shaw and her husband, John are making the most out of their retirement. After returning home following a tour of Italy to celebrate their 45th wedding anniversary, they barely had time to unpack before driving off to a folk music festival in the Blue Ridge Mountains.

Dianne retired in 2013 after nearly 30 years directing communications for a cancer center. Now, she travels frequently, dances weekly, is active as a patient advocate on a national level and enjoys writing about science when she has time to take on assignments.

Every Friday night, Dianne and John contra dance (a type of folk dance) with about 200 other people. They also travel to contra dance festivals twice a year, sometimes internationally.

In contrast, in the years prior to her diagnosis with a rare blood vessel disease, granulomatosis with polyangiitis (GPA), in 1995 and in her first eight years of treatment, Dianne felt like she was on “a roller coaster ride.”

For a long time the doctors couldn’t figure out what was wrong with her. What began with a serious case of bronchitis led to an open lung biopsy and treatment for a lung infection. Dianne’s health continued to worsen until she was hospitalized with a massive pulmonary hemorrhage. Doctors ordered a kidney biopsy, which confirmed that she had GPA.

GPA so damaged the structure of Dianne’s nose that she required two reconstructive surgeries to restore airflow. She has lost a salivary gland, her sense of smell and her ability to hear in one ear. In all, she has had 40 surgeries, most in the area of her upper respiratory system.

Eventually, Dianne’s doctors found a treatment plan that helps her manage her disease.

Through it all, Dianne maintained her demanding full-time job and stayed active in organizations that are dear to her heart. She still volunteers for the Vasculitis Foundation, serving as its president in 2006 when it transitioned from its original focus on GPA to become the voice for patients suffering all forms of vasculitis.

From her years of working at the cancer center says that, “what I have is bad, but it could be a lot worse. I constantly think how lucky I am.”