We’re honored to feature Tonya Henry as our Tubie Spotlight. She is a US Army Veteran and dedicated Patient Advocate. Tonya is a Tubie with multiple rare diseases who works tirelessly to give a voice to those who feel they don’t have one. She does this through her volunteer work with the Oley Foundation, content creation, and ongoing awareness efforts with the local and state government entities.
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.
This month, we’re honored to feature Tonya Henry—US Army Veteran and dedicated Patient Advocate. Tonya is a Tubie with multiple rare diseases, including Gastroparesis, Ehlers Danlos, Mast Cell Activation Syndrome (MCAS), and Primary Immunodeficiency, among others. She works tirelessly to give a voice to those who feel they don’t have one, through her volunteer work with the Oley Foundation, content creation, and ongoing awareness efforts with the local and state government entities.
Keep reading to learn about Tonya’s health journey, more about her advocacy work, and her wise words of wisdom to new Tubies.
Tonya bravely served the US Army from 1994-1998 and this included a deployment to Saudi Arabia. It was during this time that she started experiencing health issues. But, she went undiagnosed for years.
Eventually, her diagnoses included multiple illnesses (including rare ones): Gastroparesis, Ehlers Danlos, Mast Cell Activation Syndrome (MCAS), Primary Immunodeficiency, Dysautonomia, as well as Migraines, Hypotension, Hypoglycemia, Neurogenic Bladder, and Intervertebral Disc Disease.
It wasn’t until 2017 that she got her first J-tube placed. Tonya had to try several tubes before getting positive results with a mickey button and G-tube. Today, she is also on TPN.
Throughout her journey, Tonya has received support from the VA and the Oley Foundation, as well as online support groups.
Tonya has never let her diagnoses define her, or stop her from lifting others up. A passionate advocate for the rare disease community, she raises awareness about chronic illnesses that affect both herself and countless others. Tonya regularly submits health proclamations—such as Gastroparesis Awareness Month—to local and state representatives, pairing them with educational materials to inform and engage the public. She also meets with lawmakers to discuss legislation that impacts those with rare diseases. In addition to her advocacy work, Tonya is an active content creator, including past insightful articles to platforms like Migraine.com.
Her work doesn’t end there. She is an Ambassador for the Oley Foundation and regular speaker at the annual conference. In her role, she regularly listens to patients with concerns about enteral nutrition and often shares her own personal experiences to help others.
In case you missed her most recent session at this year’s conference, she discussed how to face life’s hard transitions with resilience. She said, “No matter what, attitude is important and communication is key. If your doctor or care team don’t communicate the way you want, you as a patient need to advocate for yourself.”
She also added that the OIey Conference is “like an annual family reunion. We talk online all year and then we come together and get to see each other in person.”
Tonya originally discovered LumaClean at an Oley Conference. Ever since, she’s a long-time user of StomaEase™ and StomaDisc™. She noted that she likes how it helps to seal and heal her stoma.
“My stoma was super red, and within a week of using the powder, it went from being red and irritated to more pink and normal!” Now, she uses it daily.
She even shares StomaEase™ with other Tubies and advises those in her online support groups to give it a try.
Tonya recognizes that adjusting to life as a Tubie can be challenging, but she encourages those on enteral nutrition to embrace new experiences and not let their feeding journey hold them back.
She said, “If you are worried that you may not be able to do something, reach out to a support group and ask questions. I guarantee there is someone who has done what you want to do and they can tell you how to do it.”
Tonya knows Tubies who run marathons and others who are bodybuilders. She doesn’t let her tubes stop her from rocking her grandchildren to sleep, or being a strong parent to her own children.
“Even though I don't eat meals, I bake,” she said. “I could be hooked up to a pole and bake cookies. The point is: Anything you want to do, you can still do it. You may have to adapt, but if you want to do it — continue to do it! Your life does not stop because you have a tube or a line.”
Below, discover Tonya’s educational content for those with rare diseases or follow her on LinkedIn for regular updates.
