A wake-up call to the medical community sent directly with data from commercial health insurers A new study focused on the prevalence of multisystem diagnoses among hypermobile Ehlers-Danlos Syndrome (hEDS) patients sheds light on a critical aspect of this complex condition: the widespread systemic impact it has on the body and the connection to other […]
Understanding Tethered Cord Syndrome and Occult Tethered Cord in Ehlers-Danlos Syndrome (Also see the simplified version of this article) Unravelling the tethered cord has proven to be an elusive topic. Basically, there is not a great deal of credible insight or medical research available on it. To start simply, we begin with basic anatomy and […]
Widespread chronic pain is one of the main symptoms for people with any type of Ehlers-Danlos syndrome and can be debilitating. At the same time, many common treatment options, particularly with pain medication, lead to side effects. But what if we could reduce our pain without any negative consequences? Chronic Pain Partners’ Editor-in-Chief Karina Sturm […]
Disjointed is now live on Amazon and shipping. Click here for a link to order online, Description: Disjointed is for patients with hEDS/HSD and the physicians who treat them. hEDS/HSD is an underrecognized, complex, multisystemic disorder, with the silos of healthcare’s specialties often working against effective and efficient treatment. With 21 specialist & 6 resource chapters, […]
by: ALICE HOWARTH From searching for a cure to being repeatedly dismissed, former model Tori Chalmers opens up about being part of the invisible illness community. Tori Chalmers ES Lifestyle Newsletter Having any kind of illness is tough but add to that the fact of it being invisible, at times it can seem impossible to cope with. In the […]
Many Ehlers-Danlos Syndromes (EDS) experts believe that its prevelance is higher than once thought. Estimates range from 1 in 500 to 1 in 100. Dr. Fraser C. Henderson, Sr., MD, comments in this video that “1 in 10 Americans have hypermobility connective tissue disorders. That’s 30 million people – and we don’t know exactly […]
By KYLE GRABOWSKI @kylegrbwsk NORTHAMPTON — Hannalise Rivera-Lovett jumped to intercept a pass. She was playing in a summer league basketball game at JFK Middle School between her sophomore and junior seasons to stay fresh for the winter. Everything above her knee went one way, everything below went the other. The torque caused a subluxation […]
BY Kaytlyn Leslie of the Tribune News. Watch this video about the EDS patient who inspired the Ehlers-Danlos portrayal in the Oct. 13 episode of the TV show “Grey’s Anatomy”. Olivia Herzoff, 19, has Ehlers-Danlos syndrome, a rare connective tissue disorder that gives her constant pain and a range of related medical issues. An Oct. […]