Diagnosis Journey
The discussion highlights the challenges many face in obtaining a diagnosis for conditions like Ehlers Danlos syndrome, often taking years due to a lack of awareness among health practitioners. Having a background in physical therapy can provide a unique advantage, as it fosters a higher level of medical literacy, enabling individuals to navigate their symptoms and research more effectively. Many find themselves having to advocate for their own health, sometimes discovering their diagnosis independently.In this clip
From this podcast
The Running Explained Podcast
s4/e09 Running & Living with Chronic Illness with Dr. Kate Bochnewetch, PT, DPT, CSCS
Related Questions
Hi Dr. Huberman. I love your show. I wonder if you could do an episode on Ehlers Danlos Syndrome. As a psychotherapist, I have a number of white women in my practice who tell me they have this disorder, which makes me suspect that the prevalence is much higher than we think. Being a connective tissue disorder, it affects most organ systems and has cascading effects for how "best practices" in healthcare actually work on these patients. (For example: anesthesia resistance, etc.) Yet these patients experience a high level of dismissal and gaslighting from physicians who seem uneducated. What should physicians know? How should patients advocate for themselves? What kinds of things can EDS patients do to improve their own quality of life?
I was diagnosed with Ehlers-Danlos. I was told there is no cure or help. Is there anything I can do to manage my condition?
How about an episode on Ehlers-Danlos syndrome? It seems to be a significant issue that leads to a lot of problems. Is it a gene defect? How do people with it live their best lives? I have a 23-year-old son who has been sick for 5 years with no good answers. I'm pretty sure he has it, but getting to the right people to diagnose it is very difficult because most doctors have no clue about it or genetics.