From patients to investigators: Gates summer internship alumni appear on podcast to raise awareness of Ehlers-Danlos research

When Jeevan Mann, now a professional research assistant at University of Colorado Anschutz Medical Campus, was diagnosed with an ultra-rare form of the Ehlers-Danlos Syndromes (EDS) in his late teens, he immediately tried to learn more about his connective tissue disorder. There weren’t many resources for EDS patients (or for clinical providers and scientists) at that point, but one expert whose counsel he came to value was Linda Bluestein, MD, who hosts The Bendy Bodies Podcast. The program explores the science and clinical management of symptomatic joint hypermobility in a range of disorders, including EDS. Mann, 21, became a regular listener of the podcast because of his respect and admiration for Bluestein, an anesthesiologist whose career was interrupted by hypermobile EDS, or hEDS, the most common form of the condition, marked by loose, unstable joints that easily dislocate. Bluestein adapted and reinvented herself as the Hypermobility MD and now specializes in treating patients with hypermobility conditions.

Mann himself became a guest on the podcast recently. Mann has overcome numerous health challenges throughout his educational career, graduating in just 2 ½ years from University of California - Davis and completing internships with the Gates Summer Internship Program (GSIP) in 2023 and 2024 (see related article, here). He now works full-time in the laboratory of his GSIP mentor Ganna Bilousova, PhD, Gates Institute member and CU Anschutz associate professor of dermatology, whose research using induced pluripotent stem cells (iPSCs) is leading to a better understanding of EDS and other disorders.

Mann, who has learned much more about his condition through his work in Bilousova’s lab, was joined on the podcast by Delaney Kenney, a 2024 GSIP alumna who also has EDS, to talk about EDS research at CU Anschutz and their experience having a condition that is not well-known.

"Over the years, I have been honored to bring the world’s leading experts in EDS — in the scientific understanding of these conditions and the clinical treatment of the various life-limiting symptoms — to the microphone," said Bluestein. "It was especially meaningful to interview Jeevan and Delaney because they represent the future of EDS awareness, understanding, research, and clinical care.”

Exploring the Potential of Regenerative Medicine

Mann, inspired by his journey from patient to researcher, now aims to pursue a dual MD-PhD to further explore regenerative medicine and translational research. On the podcast, Mann discussed having an ultra-rare form of EDS defined by the AEBP1 gene; this type is called classical-like Ehlers-Danlos Syndrome (clEDS). Believed to have a prevalence of only 1 in 1 million people, clEDS was diagnosed in other patients, according to the literature, only 10 times before Mann’s own diagnosis. This form, one of 13 known forms of EDS, has unique skin findings including striae (stretch marks), impaired wound healing, and early wrinkling of the hands, feet, and face.

“It’s one thing to understand the medicine of the condition, but it’s another to understand the molecular basis and the research behind the disease,” Mann said. “We’re actually using an in vitro model of EDS using a 3D skin equivalence model… using fibroblasts and keratinocytes [two cell types that interact and are important for wound repair].”

Using the manufactured skin enables further testing to look at how EDS presents under the microscope, Mann said. They’re able to see the architecture of the skin and how the collagen is organized.

“We are able to study [EDS] at a far greater capacity with multiple replicates,” said Mann, who plans to one day study regenerative medicine as a physician-scientist. His experience in GSIP has helped shape him as a researcher.

“It’s been amazing to be at a program where I not only study my own disease, but I also get a chance to study with another amazing intern who understands what it’s like, day-to-day."

Delaney Kenney, senior neuroscience major at Haverford College, presenting her research during the Gates Summer Internship Program (GSIP).

During her internship with Gates Summer Internship Program, Delaney Kenney worked in the lab of Ganna Bilousova, PhD.

Jeevan Mann completed two internships in the lab of Ganna Bilousova, PhD, (right) and now works as a professional research assistant in the lab.

That intern was Kenney, 23, a senior neuroscience major at Haverford College in Haverford, Pennsylvania. She spoke of the years of frustration struggling with injuries as a competitive athlete in school sports and youth leagues. She initially presumed her symptoms were typical athletic injuries — until she saw a physical therapist who also suffered from EDS, which led to her diagnosis about a year ago. Knowing her condition had a name, she was able to advocate more effectively for her needs. She suffered from overwhelming fatigue, brain fog, and dysautonomia, which were exacerbated during stressful times — like taking exams. Dysautonomia, a malfunction of the autonomic nervous system, causes lightheadedness, blood-pressure changes, fainting, and other disruptive symptoms. “I can get certain accommodations now, which has been super helpful,” she said.

Both former interns talked about the profound benefits of being a part of the GSIP at Anschutz, where they were not only able to conduct novel research but also found a community that understood their condition.

“I’d say the main thing for me has been the support of everyone at the Gates Institute,” said Kenney. “It’s helpful to know that I’m immediately understood by what I have and everybody around me accepts it.”

Kenney plans to enter the field of scientific communication with the hope of increasing public knowledge about EDS and other lesser-known conditions. Kenney has advice for others living with chronic illnesses or experiencing unexplained symptoms: “Trust your instincts and advocate for yourself.”

Delaney and Jeevan’s stories illuminate the critical intersections of personal health challenges with professional and academic goals. Their experiences underscore the value of supportive educational programs like GSIP, which not only advance research but also foster environments where students with conditions like EDS can thrive and contribute significantly to science and medicine.

“It was a pleasure and honor to be a guest on The Bendy Bodies Podcast,” Mann said. “It felt like a full-circle experience to appear on the very program that I have turned to for answers.”

Note: Learn more about EDS and check out Mann and Kenney’s interview at www.BendyBodiesPodcast.com.