Ehlers-Danlos Syndrome not as rare as you might think

KJRH ran a story today on Jasmine "Jazzy" Smith, an 18-year-old Oklahoman who is undergoing treatment in Florida for conditions related to Ehlers-Danlos Syndrome:

TULSA, Okla. -- An 18-year-old Oklahoma singer whose life revolved around performing is now fighting for her health after a rare connective tissue disorder left her nearly bedridden.... "When I was a dancer, cheerleader, I always dislocated things, subluxed my knees, shoulders, and then subluxed my neck," Smith said. "Then after like a few months, it just all I started regressing really badly, and I was noticing really weird brain patterns." Doctors eventually diagnosed her with Ehlers-Danlos Syndrome, a rare connective tissue disorder that can affect nearly every system in the body. Months ago, her health collapsed completely. She endured long hospital stays, severe head and spinal pain, multiple daily seizures, and days without sleep.... In Florida, doctors diagnosed Cervical Cranial Instability, a malformation, and Intracranial Hypertension -- conditions linked to Ehlers-Danlos Syndrome that increase brain pressure and cause regressions to systems in her body.

The news story describes it as rare, but at a prevalence of 1 in 3,100 for the most common type, hypermobile EDS (hEDS), there's a decent chance that someone in your world has Ehlers-Danlos Syndrome (a disorder affecting the formation of collagen in the body). At that prevalence, there could be around 1,300 people in Oklahoma with EDS. The effects vary and for many are not as severe as Jazzy Smith has experienced. Because collagen is everywhere, seemingly unrelated symptoms -- joint hypermobility, headaches, tachycardia, allergic reactions to foods (mast cell activation disorder) -- may all be downstream of the same root cause, but doctors who are unaware of EDS may just try, unsuccessfully, to treat the individual symptoms. Recently we met someone who had worked in the medical field and had EDS symptoms, like frequent shoulder dislocation and tendon rupture as a side effect of Cipro (see note below), but had never heard of EDS. There needs to be more awareness. Tulsa is blessed with at least one doctor, David Chorley at Axis HealthCare in Bixby, who understands EDS, and there are online communities like EDSOK - Ehlers-Danlos Syndrome Oklahoma, which can help you find EDS-aware specialists and resources for learning to live with EDS. An EDS patient named Deborah Cusack has developed a nutritional approach, called the Cusack Protocol, which "focuses on improving connective tissue integrity and function through a combination of supplements targeting specific cells involved in collagen production and tissue repair. NOTE: People with EDS are one class among several who are at risk for tendon rupture and other severe side effects from the fluoroquinolone family of antibiotics, which includes ciprofloxacin (marketed as Cipro and generic ciprofloxacin), ciprofloxacin extended-release (marketed as Cipro XR and Proquin XR), gemifloxacin (marketed as Factive), levofloxacin (marketed as Levaquin), moxifloxacin (marketed as Avelox), norfloxacin (marketed as Noroxin), and ofloxacin (marketed as Floxin).
- January 01, 2026 at 06:34PM
Ehlers-Danlos Syndrome not as rare as you might think
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