Lynn’s lifelong health journey, marked by countless surgeries and setbacks, is a testament to courage and purpose. Instead of giving up, she turned her experience into advocacy—supporting others through online communities, national organizations, and active involvement in both local and federal health policy. Keep reading to learn more about Lynn’s remarkable story.
At LumaCleanCares, we are constantly inspired by stories of perseverance and innovation within the healthcare community. Stories like Lynn Wolfson’s not only move us; they help us uncover critical gaps in patient care and drive the development of innovative medical solutions.
Born in 1959, she spent her early years undiagnosed with Hirschsprung’s Disease—a condition then rarely identified in girls. After years of misdiagnoses and debilitating symptoms, she was finally diagnosed at Boston Children’s Hospital, where she underwent multiple surgeries, including her first colostomy at age 7. Her childhood was marked by medical trauma, frequent hospitalizations, and financial hardship.
Despite decades of severe complications—including intestinal ruptures, feeding tubes, TPN, and eight ostomies and ileostomies—she pursued higher education, raised two daughters, and built a career in both business and education. Now living with a permanent ileostomy, a tube for venting, regular catheterization and TPN, Lynn recommends other Tubies try StomaEase™ and StomaDisc™ if they are experiencing pain around their stoma.
She continues to face complex medical challenges with unshakable strength. Her story is one of profound perseverance, medical advocacy, and hope.
After a lifetime navigating the healthcare system, Lynn turned her challenges into powerful advocacy.
Today, she serves as President of The Ostomy and Feeding Supply Bank, where she collects and ships essential medical supplies—like formula, syringes, and feeding bags—to people across the country at no cost. They also send out colostomy, ileostomy and urostomy supplies in addition to enteral feeding supplies and urinary catheterization supplies.To date, she’s sent out more than 100 life-changing care packages to those in need.
Lynn also leads the South Florida Ostomy and Tube Feeding/HPN Support Group and serves as Director at Large for the United Ostomy Association of America (UOAA). Her lived experience and deep understanding of complex care make her a trusted resource for patients and caregivers alike. The support group offers emotional, psychological and social support to ostomates and people who are medically fed. They also have WOCN nurses, psychologists and physicians who help with this support.
Through her website, Lynn champions “Lynn’s Law”—a proposed initiative advocating for accessible restrooms for individuals with ostomies, feeding tubes, catheterization needs, and other chronic conditions. She travels to Washington, D.C. annually to monitor legislation affecting the rare disease community and was even recognized in the official minutes of the U.S. House of Representatives. Closer to home, she regularly consults with Florida lawmakers to share the patient perspective.
Lynn’s impact has earned her numerous accolades and appointments, including:
She was also appointed by Broward County to serve on the Structural/Architectural, Fire Code, and Plumbing Committees under the Broward County Board of Rules and Appeals.
You can read Lynn’s work via the Oley Foundation, Ostomy.org, and more on her website.
Lynn said: “When you look at me what do you see? Most people see me as a normal human with an enlarged abdomen. As far as my personality, people see a kind and empathetic person. A person who takes on so much … but who am I really?”
Lynn is someone who perseveres. She replaced negative influences in her life and replaced them with supporters.
“I connected with the right people and walked forward, many times leaving people with negative influence behind. I made myself knowledgeable, organized, and powerful.”
By doing this she discovered her own purpose, a purpose that keeps her going.
“I have a right to live and no one can take that away from me. I will live a productive life despite my illness. I want to see how many people I can help; I want everyone to feel meaningful and productive. This is what makes life worth living. I want to make the world a better place.”
What’s your purpose? Lynn encourages you to find that, and let it propel you forward through the difficult times.
