Joint Hypermobility
Tethered Cord in EDS: A Patient Guide to Symptoms, Diagnostics, Treatments, and Risks
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 […]
PT Elan Schneider on Neuroplasticity and New Approaches to Treat Chronic Pain
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 a new book for patients with hEDS/HSD and their physicians
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, […]
What it’s Like to Live with a Serious Invisible Illness Like EDS
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 […]
Kristin Means Discusses Her Journey with EDS
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 […]
Telling My Teammates “I Have Ehlers-Danlos Syndrome”
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 […]
“Grey’s Anatomy” Ehlers-Danlos Episode
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. […]
High Tryptase Associated with Dysautonomia and POTS
Scientists at the National Institutes of Health have identified a genetic explanation for a syndrome characterized by multiple frustrating and difficult-to-treat symptoms, including dizziness and lightheadedness, skin flushing and itching, gastrointestinal complaints, chronic pain, and bone and joint problems. Some people who experience these diverse symptoms have elevated levels of tryptase — a protein in […]
