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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 Bethany Lebo. After receiving multiple diagnoses including Ehlers Danlos Syndrome, Gastroparesis and Mast Cell Activation Syndrome, she took to social media to share what life is like with a disability—creating a space for others to find solidarity and amplify the voices of those navigating similar challenges. Today, Bethany is a strong chronic illness advocate on Instagram on her account @rebellious_story.
Her involvement in the tubie community further highlights her commitment to raising awareness and offering resources to individuals living with chronic conditions. This includes her support of both StomaEase™ and StomaDisc™, both of which completely changed her life (and saved her stoma).
Discover Bethany’s inspiring journey and see how she navigates life with a disability—all while creating content that empowers, uplifts, and builds a supportive community.
For years, she struggled with symptoms of chronic illness, but went undiagnosed. Bethany took to social media to better understand rare medical conditions, and to connect with others who’ve been through similar circumstances. Her research eventually led to her diagnosis of Ehlers Danlos Syndrome (EDS) at the age of 17. Later diagnosed with Gastroparesis, Hereditary Alpha Tryptasemia and Mast Cell Activation Syndrome, Bethany’s medical devices include a power wheelchair, a port-a-cath central line, and a GJ Feeding Tube.
After receiving a diagnosis, Bethany felt passionate about sharing her story in the hopes of helping others looking for answers. So, she started her Instagram account @rebellious_story to candidly share her experiences, be a voice for disability rights, and ultimately “give back some of the immense help I have received to the disabled community,” as she says on her blog.
After starting her account, her health started to decline and she was diagnosed with Mast Cell Activation Syndrome (MCAS). During that time, she found solace in her online community, stating: “I felt like I had an outlet during that time to talk about what was happening to me, medically speaking, to other people in the same boat.”
Today, she has more than 7,000 followers. As an influencer, Bethany is a beacon of hope and a safe space for the disabled community.
“I’ve had a lot of people reach out to share their story or to simply thank me,” she said. “It’s been great to see my community respond and also exciting to see that social media is even attracting doctors and nurses to follow accounts like mine … so they can see on a personal level what it’s like to live with these diseases.”
In addition to her advocacy work, Bethany channels her creativity into her Etsy shop, "Speechless Crochet." While it's a small business, it brings her joy and provides a meaningful outlet that adds to her sense of purpose.
Since 2018, Bethany faced anaphylaxis with every meal, requiring elemental tube feeding as infant formula was all her body could tolerate. After reacting to an NJ tube, she transitioned successfully to a GJ feeding tube.
Bethany endured pain and leakage from her stoma, which was inconveniently located at her bra line. The pressure even caused a one-inch tear in the stoma. Bethany tried everything to fix her stoma, but nothing worked. She even discussed moving her stoma (an extensive surgery) with her doctor. Finally, she discovered StomaEase™, StomaDisc™ and EnClean® Brush. After using LumaCleanCares’ powder and disc, her stoma healed in just one month!
She said: “The skin hasn't been breaking down anymore, and it's easier to sterilize silicon than a tubie pad or gauze. The fact that it heals my skin is drastically different. The constant wetness from pads and gauze would cause abrasions and tears, and I would even get leakage on my clothing. But, with StomaEase it [my stoma] never leaks on clothing and my clothes never smell like feeding tube gunk. At the end of the day, that’s a big deal!”
Bethany added: “I’ve lived with pain around my feeding tube since I had it placed due to a combination of poor placement and granulation tissue and that is all gone now. I firmly believe [StomaEase™ and StomaDisc™] should be carried in every hospital for patients with feeding tubes.”
Whether it’s online influencing or starting her own Etsy store, Bethany isn’t afraid to take on new challenges. She encourages others to do the same—regardless of feeding tube limitations. If there’s something you want to achieve or take on, she says, “Do your research and take the plunge! Just know how to approach it with your disability. You will never be 100% prepared, so jump in and roll with the punches.”
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, comments or do you have a story you would like to share regarding using our products? We would love to hear from you!
