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Your Health Unlocked Episodes
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August 8, 2024
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Your Health Unlocked Episodes
Publication Date: June 13, 2023
By: NWHN Staff
One of the world’s leading experts in Ehlers-Danlos Syndrome (EDS), Professor Rodney Grahame, claimed: “No other condition in the history of modern medicine has been neglected in such a way as Ehlers-Danlos Syndrome.” Having waited 45 years for a diagnosis, this neglect certainly resonates with Lorie Ringo, who endured a harrowing journey of misdiagnoses and constant dismissal from medical professionals.
A highly complex illness which can result in serious complications, hypermobile Ehlers-Danlos Syndrome (hEDS), is a connective tissue disorder affecting at least 1 in 5,000 people worldwide. But it is the emotional trauma leading up to the diagnosis which sticks with Lorie just as much as the diagnosis itself. Lorie not only had to become a medical advocate for herself, but also for her child Carter, going to great lengths to secure proper treatment to prevent her child from experiencing the same obstacles to care she faced.
This intrafamily podcast episode not only shines a light on the challenges of living with hEDS, but also is a testament to how devastating it can be when you are not listened to, gaslit, and put on the sidelines by medical providers while managing a chronic illness.
Carter Ringo is a multimedia artist and MICA graduate who studied interactive, sound, and game arts. In 2022 they completed their second 3D Modeling Internship at the NASA Goddard Space Flight Center. They have a passion for theater and environment design and have worked in the past with YGENYK Productions as a costume designer and photographer. They have many years of experience in digital illustration, digital fabrication, web design, and 3D modeling.
Carter is the current multimedia communications lead at the NWHN and the editor of the Your Health Unlocked podcast. Previously, they helped found a disability equity and access advocacy network, completely reforming the way their college campus thinks and acts around accessibility.
Lorie Ringo is a ceramic artist and amazing mom with two adult children. She was a ceramics teacher for over 15 years, teaching people of all ages. She is a strong self activist and an inspiration to her youngest, Carter.
It took 45 years of emotional trauma, misdiagnoses, incorrect medication, and constant dismissal, for Lorie to finally get an accurate diagnosis. Lorie’s experience helped her to advocate for her child Carter when she began noticing similar symptoms. This led her to proactively seek the correct treatment and care to allow Carter to better manage this chronic illness from a much younger age than she had been able to.
Some Terms and Linked Definitions:
References Mentioned:
Learn more about Kelly Freeman’s book “The Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients” on goodreads.
Read more about the “spoon theory” and how it is used to manage chronic illness in this article by The Washington Post.