ENERGY IN ACTION – EPISODE 067
What’s It Like Being a Research Patient with UDN – Ted Will Tell You
In addition to being the host of the Energy in Action Podcast, Stephanie is a mom to three children. Stephanie’s son Ted is the youngest of three siblings with two older sisters. Ted and Stephanie recount the mitochondrial disease journey from their shared mother-and-son perspectives.
What compels me to host this podcast is my need to find my tribe. As an early adopter of rare disease and mitochondrial dysfunction, I was often alone, never understood and my peers couldn’t relate to me. The internet wasn’t as robust as it is now and social media wasn’t a thing. We were told that Ted was un-treatable and had a 10-12 year expected lifespan. I began researching and found Mito Action. I have found other parents who speak my language, who understand my heartache, my joy and my absolute frantic need to find answers and treatments.
In 2013, Ted had a serious illness and was septic from a line infection. For 23 days, Ted’s body would improve and then backslide. It was during this time when we noticed neurological concerns, and Ted had the first of many MRIs.
A growth was discovered near Ted’s pituitary gland. With more research, I found a research study happening at the NIH and submitted all the necessary documents. When I heard back from the NIH, they wanted to see Ted and two weeks later we went to DC. It was there that we became part of the mini-study and the Undiagnosed Disease Network.
For the first year and a half of being part of the mini-study, we did a lot of back and forth from Minnesota to DC where we would stay for two or three days. It was during one of those visits where they started realizing that Ted’s immune system was a bigger piece of the diagnosis puzzle. Ted was getting super flu shots and a pneumonia vaccine every year, which most people usually get once every five to 10 years. It was also confirmed that Ted had a tumor on his pituitary gland and he started developing side effects.
After graduating high school and enrolling in a local community college, Ted’s pituitary tumor started affecting him at work and school. He began experiencing dizziness, headaches, migraines, loss of appetite, memory loss, and he lost over 20 pounds in less than a month. After surgery to remove the surgery, there’s been no new growth or evidence of the tumor after a year.