Why do so many people with hypermobile Ehlers-Danlos Syndrome (hEDS) also struggle with symptoms that look like Mast Cell Activation Syndrome (MCAS)? And why is it still so hard to prove what’s actually driving that connection?
On today’s episode of @bendy_bodies, I spoke with hematologist and mast cell disease expert Dr. Lawrence B. Afrin about the current state of research on MCAS and hypermobile EDS. While no one has definitively proven that MCAS causes hEDS, Dr. Afrin explains why the clinical patterns are “suspicious” — and why existing genetic studies may be missing key pieces of the puzzle.
Most research has focused on inherited mutations found throughout the body. But what if the relevant changes are happening only in specific cell types, like mast cells? So far, those targeted questions haven’t been fully explored — especially not at the level of mast cell behavior and mediator release.
Dr. Afrin emphasizes an important distinction: the absence of proof is not the same as proof of absence. When real-world patient patterns keep pointing in the same direction, it’s worth asking better, more precise scientific questions.
💬 Your turn: Have you noticed MCAS-type symptoms alongside your joint hypermobility? What patterns have you seen in your own experience?
#BendyBodies #MastCellActivationSyndrome #MCAS #HypermobileEDS #Hypermobility #PatientAdvocacy #ChronicIllnessAwareness
📌 Medical Advice Disclaimer: This content is for educational purposes only and is not medical advice. Always consult your healthcare provider for personalized care.
VD: Dr. Lawrence B. Afrin wearing glasses, a tie and white coat on the Bendy Bodies Podcast.
