New York—September 26, 2013
Update: Full event video now available online. Watch now.
As part of Hospital for Special Surgery’s 150th anniversary celebration, the Division of Rheumatology honored the thousands of lupus patients, past and present, who have inspired each member of the HSS healthcare team. “Honoring Lupus Heroes” celebrated patients’ wisdom, generosity and invaluable contributions to lupus research and care. “We are deeply grateful that they have allowed us to learn from their journey and grow as caregivers,” HSS physician-in-chief Dr. Peggy Crow said at the event on September 24.
“Our patients are the unsung heroes who have helped transform lupus care,” said Dr. Jane E. Salmon, Director of the Lupus and Antiphospholipid Syndrome Center of Excellence at Hospital for Special Surgery (HSS) at the event. “They donate blood and tissue samples for research, take investigational drugs in clinical trials, and provide personal insights to improve how we care for them and for others. They are philanthropic and volunteer as peer counselors. They sacrifice time, energy, personal resources and their own privacy to advance science and clinical care.”
An auto-immune disease that can impact the joints, skin, kidneys, heart and other organs, lupus affects more than 600,000 people in the United States. HSS is internationally known for research into the disease and treats one of the world’s largest populations of lupus patients.
“When I started out as a physician many years ago, the average survival rate was around three years. Today it is rare to lose a patient to lupus,” said HSS rheumatologist Dr. Michael Lockshin. “Advances in lupus treatment have transformed it from a fatal disease to a chronic illness, enabling many people to lead normal lives. What makes these people heroes are that they are willing to be a part of this and help us do our job better.”
One such patient is Rachel Grodzinsky, among the first to participate in a study at HSS which challenged the widely-held belief that women with lupus should not become pregnant.
“I felt somewhat honored to be a part of it. I felt it was really important,” she recalled. “Pregnancy was something I had been struggling with for a few years before I actually got into the study. It felt very dear to me because it was something that I felt would help others.”
Ms. Grodzinsky later became the proud mother of two sons.
Marielin Lopez was initially treated at HSS 13 years ago. She was moved to tears as she described how the HSS team helped her get through difficult times. She is now a bilingual volunteer and health educator at HSS, focusing on underserved families and adolescents living with the disease.
“I am very passionate about empowering people and making a difference in their lives, especially Latinos living with lupus,” she explained. “For me, the most effective medication and Lupus cure has been experiencing the joy, fulfillment and health benefits of sharing my story and being there for them.”
Another HSS patient, Karen Ng, cited the importance of helping other Lupus patients, particularly members of her Asian American community. After she was diagnosed with lupus, she discovered that there were few resources available for patients like her.
Ms. Ng helped launch the LANtern® Lupus Asian Network at HSS, the only national hospital-based bilingual support and education program dedicated to serving Asian Americans with lupus and their families.
“Our mission is to support, empower, and enhance the quality of life of Asian Americans with lupus and their families through our bilingual peer health education program,” Ms. Ng explained. “Our goal is to bring hope and provide enlightenment concerning this complex illness.”
At the event, Dr. Lockshin presented an historical timeline of lupus and HSS, including important milestones representing significant breakthroughs in research and treatment. Several lupus patients and their family members reflected on their experiences at Hospital for Special Surgery and how they were inspired to make a difference in the lives of other patients. In addition, HSS team members—including physicians, nurses, social workers and others—paid tribute to specific “Lupus Heroes.”
Monica Richey, RN, nurse practitioner for the Lupus Center of Excellence, talked movingly about how HSS patients have inspired her every single day with their courage, humor and what she described as “the power of persistence.”
She shared a quote which she believes exemplifies the spirit of the “Lupus Heroes:” “Persistence is what makes the impossible possible, the possible likely and the likely definite.”
At the conclusion of the event, HSS physician-in-chief Dr. Peggy Crow unveiled a plaque honoring the heroic lupus pioneers and all of the HSS patients who continue to help advance the field.
“Our ‘Lupus Heroes’ are extraordinary people whose contributions have helped improve the lives of thousands of individuals with the disease,” said Dr. Crow. “They have taught us poignant lessons about compassion, service and excellence in care. We are deeply grateful that they have allowed us to learn from their journey and grow as caregivers, and we’re thrilled to have this opportunity to honor them.”
A Lupus Chat will take place on the HSS Facebook page (Facebook.com/hspecialsurgery) on November 6 from 5:30 to 6:30 p.m. EDT. Physicians will be on hand to answer any questions patients may have regarding the disease.