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.
In this episode, you will find out:
- What Ehlers-Danlos Syndrome is and how it can present in different people
- The comorbidities that might present themselves along with Ehlers-Danlos Syndrome
- How Ehlers-Danlos Syndrome affects Carter and Lorie in their everyday lives
- Lorie and Carter’s journeys from symptoms to diagnosis
- What the most helpful tools have been in helping them to navigate this illness
More about Carter:
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.
More about Lorie:
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.
Resources for Episode 021:
Some Terms and Linked Definitions:
- Hypermobile Ehlers Danlos Syndrome
- Connective tissue disease
- Mast cell activation syndrome (MCAS)
- Occipital neuralgia
- Trigeminal neuralgia
- Craniocervical instability (CCI)
- Chiari malformation
- Vagus nerve
- Autonomic nervous system
- Fifth disease
- ANA test
- Myofascial release
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.
The primary purpose of this podcast is to educate and entertain. All views expressed by the persons featured on the Your Health Unlocked podcast are their own and do not reflect the opinions of the NWHN or its affiliates. Information provided in this podcast does not constitute medical advice. Consult your own provider for any medical issues that you may be experiencing.