At LumaCleanCares, we are constantly inspired by stories of perseverance and innovation within the healthcare community. It’s often how we identify unmet gaps in patient care, and design innovative medical solutions.
At LumaCleanCares, we are constantly inspired by stories of perseverance and innovation within the healthcare community. It’s often how we identify unmet gaps in patient care, and design innovative medical solutions.
One such story is Juliette McAleer. Juliette is not just a mother of three, stepmother of two, and a marathon runner; she is a testament to the strength of the human spirit. After a series of near-death experiences in late 2020, where she lost most of her small intestine due to a twisted bowel, Juliette's life was drastically changed. Diagnosed with Short Bowel Syndrome, she faced the challenge of severe malnutrition and debilitating health issues, including the subsequent development of Anorexia Nervosa and PTSD. But instead of allowing her conditions to define her, she became a trailblazer, determined to live life on her own terms.
Juliette spent six months in the hospital, undergoing traumatic surgeries, and relying on total parenteral nutrition (TPN) to keep her alive. After leaving the hospital, she faced constant nutritional deficiencies that affected her energy and health. Despite her reluctance, Juliette eventually agreed to try a feeding tube, a decision that would change her life. Though it wasn’t easy, she realized that it was her path to living a fuller life.
With the support of her dietitian, Juliette learned to navigate life with a nasogastric (NG) tube. Despite initial fears about returning to work with the tube, her colleagues' support gave her the confidence to embrace her new normal. Eventually, she transitioned to a gastrostomy tube, which offered more comfort and freedom. “Nobody wants a feeding tube, but if you need one, they can be utterly life-changing,” Juliette said.
Amid her medical and psychological battles, Juliette found solace in an unexpected place: running. Encouraged by a close friend, she entered a 5km race in July 2023. Against all odds, she crossed the finish line. For Juliette, this race wasn’t just about running—it was about reclaiming her identity. “That day, I replaced ‘patient’ with ‘runner,’ and it stuck,” she reflected. Since then, Juliette has achieved personal bests at numerous running events, including finishing in the top 5% of all women at the Bridge to Brisbane 10km in 2023 and winning a gold medal at the 2023 Maryborough Masters Games. Juliette is particularly proud of her personal best 5k Park Run time of 23:13.
As she continued her running journey, Juliette was determined to conquer longer distances. She trained and completed her first half marathon in February 2024, and first full marathon in July 2024. So far in 2024, Juliette has completed two 10km races, four half marathons, a full marathon, four triathlons, and two endurance cycling events (50km and 100km). Despite the challenges of running with a feeding tube, Juliette feels grateful to be able to pursue her running and triathlon goals because of the improved nutrition provided by her tube.
Beyond her athletic accomplishments, Juliette is a passionate advocate for the tube-fed community. She actively works to raise awareness about tube feeding and the social and systemic barriers faced by individuals trying to lead fulfilling lives with their tubes. With her PhD in progress and a focus on the psychosocial impacts of home enteral and parenteral nutrition, Juliette is deeply committed to creating positive change for the Tubie community.
At the heart of her mission is the desire to ensure that tube-fed individuals are seen, heard, and supported. She is a firm believer in the power of storytelling and strives to amplify the voices of others who face similar challenges. Whether advocating for better healthcare support or sharing her personal journey, Juliette is a beacon of hope for others navigating life with a feeding tube. “Not every tube-fed person will want to pursue endurance sports – that just happens to be my thing - but behind every tube–fed person is a person with individual passions, skills and abilities, and it is important to see us as more than our medical devices. One of the ways this can be done is by focusing on the wonderfully unique lives our tubes enable, rather than perpetuating the pity narratives that often overshadow these things.”
Juliette has also spoken at prominent conferences like Dietitian’s Australia and AusPEN—sharing her story to ensure that tube-fed lives are represented in community and service system design.
In August 2024 Juliette connected on LinkedIn with Maureen O’Gara, a Patient Advocate with LumaCleanCares. Drawn to the company’s dedication to innovation and collaboration, Juliette saw a shared commitment to improving the lives of individuals with feeding tubes.
Juliette uses the 30-Day brush Enclean® brush, which she praises for its ability to clean the ENfit® tube feeding connectors thoroughly. Her personal experience with the Enclean® brush has helped her manage her complex health needs, further empowering her as both a patient and a runner.
Juliette has also been using the StomaDisc ™ with StomaEase ™ powder to help manage the hypergranulation tissue that sometimes causes issues around her stoma and tube. Having had a stoma bag in the past, she was using ostomy powder to keep her enteral stoma site clean and dry, and to prevent irritation.
She has tried other products, including those designed for nappy rash in infants, and also over the counter and prescription steroid creams in order to manage the enteral stoma issues that pop up from time to time. StomaEase™ has been an exciting discovery for a couple of reasons:
1. Because it is designed with enteral stomas in mind (no more repurposing solutions designed for other issues!).
2. Because the StomaDisc™ itself has proved useful as an alternative to fabric ‘tubie pads’ for managing skin irritation around the stoma and stabilizing it when she is engaged in physical activity. Even though it is not designed for swimming at this stage of development, she has used it for both pool and open water swims, commenting “I can’t wear tubie pads in the water because they get soggy! The StomaDisc ™ stays put and stabilizes my tube, preventing rubbing and tube movement from causing irritation while I swim. I don’t know any other product that does this.”
Juliette appreciates companies who produce solutions for tubies and involve them in the co-design of their products.
“It is hard for someone who has never lived with a feeding tube to understand the daily frustrations, issues and inconveniences of trying to home tube-feed using equipment not designed for full and active lives,” she said. “Sometimes I look at the equipment I have, and I can clearly see it was not designed with convenience and individual differences in mind. I wonder whether I am supposed to simply embrace a life where I am expected to fit around my equipment and tube-feeding routines rather than the other way around.”
Juliette explained that the thing she appreciates most about LumaCleanCares is that they are making genuine efforts to include and involve tube fed people in identifying the problems to be solved and working with them to solve them.
Juliette’s story is one of perseverance in the face of life-altering challenges. Her determination, persistence, and belief in the power of community have transformed her life. As she continues to push boundaries—both as an athlete and as an advocate—Juliette is a shining example of what it means to find strength in unexpected places.
“I love proving to myself and everyone who cares that my body can do something no one thought it could,” Juliette says. “The mind is an incredibly powerful thing when you use it to harness the inherent capabilities of your amazing human body.”
Juliette McAleer is truly a Tubie Hero—someone who has not only defied the odds but continues to inspire others with her courage and resilience. Through her advocacy, research, and athletic achievements, she is paving the way for a more inclusive and supportive world for tube-fed individuals everywhere.
Here at LumaCleanCares, we identify gaps in care and design medical devices to advance the patient experience. Are you a medical professional interested in learning more about our products? Do you have an idea for a medical device, regardless of healthcare type? Are you an enteral feeding patient with questions or comments? We would love to hear from you!
About the Author: Maureen O’Gara is LumaCleanCares’ dedicated patient advocate and seasoned professional with extensive experience in customer service and sales, primarily within the medical industries. Over the past two years, she has focused her expertise on the enteral feeding and medical device field, driven by a personal journey that began with her niece, Jennifer Loughlin. Born as a micro-preemie in Ireland, Jennifer required a feeding tube from birth, sparking Maureen’s passion for supporting individuals reliant on enteral feeding.
Determined to find a solution for Jennifer, whose doctors in Ireland recommended surgery that would require a lifetime of tube feeding, Maureen tirelessly sought alternative options. Her efforts led her to Dr. Keith Williams' specialized feeding clinic in Hershey, Pennsylvania. After 10 months of fundraising, Maureen succeeded in bringing Jennifer to the U.S. for an intensive eight-week treatment program with Dr. Williams, which ultimately freed Jennifer from lifelong dependency on a feeding tube.
In 2018, Maureen’s mother was diagnosed with cancer and required an NG tube, deepening Maureen’s understanding and commitment to patient care.
Maureen’s professional career reflects a blend of personal advocacy and extensive industry expertise, equipping her with a unique perspective and empathy for those she serves in the enteral feeding and medical device community.
