For 25 years, folks have traveled from all over the Pacific Northwest to meet for their pulmonary fibrosis support group at University of Washington Medical Center. This week, as they celebrated the support group’s quarter-century anniversary, the room buzzed with laughter, greetings, and smiles. Some members wore oxygen tanks, necessary after the disease began hardening and scarring their lung tissue and made breathing difficult.
Pulmonary fibrosis is a life-threatening disease in which excess fibrous tissue develops in the lungs. People with pulmonary fibrosis experience a hacking cough and shortness of breath that causes fatigue, weight loss, and weakness. No single cause of pulmonary fibrosis has been identified; it is often classified as a secondary effect of other interstitial lung diseases. The term “interstitial lung disease” refers to a large group of disorders involving both lungs, most of which cause progressive scarring of lung tissue (pulmonary fibrosis). There is no cure for pulmonary fibrosis, and almost no treatment. One can only hope to be a good candidate for a successful lung transplant.
A number support group members had already received lung transplants from UW Medical Center’s transplant services. One gentleman received news one month ago to the day, as he was walking out of the support group, that he was to have his transplant.
Dave Sherry, the group leader, beamed as he described the bond between fellow members. Each month, he and the team organize a speaker from UW Medical Center or an outside medical organization to give a talk about the disease. Members also spend time voicing their fears and successes with each other.
“We have a shared destiny that ties us together,” said Sherry. In fact, this support group has been so strong throughout the years that it became a model for other support groups. One prominent Italian surgeon was so impressed that he implemented a similar system of support groups in Europe.
Representatives from the Chicago-based Pulmonary Fibrosis Foundation, including CEO Dr. Daniel M. Rose, traveled to Seattle for the support group’s 25th anniversary. Rose presented a short and fascinating lecture that compared the history of cystic fibrosis with pulmonary fibrosis. He emphasized the need for research and clinical trials, and showed how the Cystic Fibrosis Foundation’s aggressive approach to finding treatment for the disease ultimately improved the estimated lifespan of patients by more than 25 years. His goal is to approach pulmonary fibrosis with the same commitment to finding treatment and finding a cure.
Indeed, this month’s support group was particularly celebratory. In addition to the 25-year anniversary, this past week UW Medicine announced the formation of the Center for Interstitial Lung Disease. The Center’s founding director is Dr. Ganesh Raghu, UW professor of medicine in the Division of Pulmonary and Critical Care Medicine and co-director of UW Medical Center’s scleroderma clinic. Raghu is also the prescient doctor who had the foresight to start the long-running support group—the first of its kind in the world.
Said Raghu, ”The establishment of the Center for Interstitial Lung Diseases is an essential expansion of a long standing interstitial lung disease /sarcoidosis/pulmonary fibrosis program at UW Medical Center. The initiative will result in more accurate diagnoses and better outcomes for patients confronted with the challenges of interstitial lung diseases. This is the beginning of a new and exciting era of substantial progress for our patients, who will now receive care tailored to the individual patient’s preference and choice based on current and new evidence. It is my most sincere privilege and honor to serve our patients and to work with everyone at UW Medical Center. It is a superb clinical and research environment, committed to maintaining and restoring health for those in need.”
For UW Medicine, establishing the Center for Interstitial Lung Disease means more opportunities for research, collaboration, training, and technology. For these incredible patients, who have supported each other for so long, the Center could mean a new lease on life.