Study Title: Use of Complementary Therapies for Pain Management in Patients with Ehlers-Danlos and Hypermobility Spectrum Disorders – Principal Investigator: Jessica Demes
The purpose of our study is to learn more about how adult patients manage their pain when affected by Ehlers Danlos or a Hypermobility Spectrum Disorder. We are hoping that you could provide your opinions and perspectives in this survey.
To join the study, we will ask you to complete a survey with questions about hypermobility and how you experience and manage any pain you have. These questions may take approximately 30-45 minutes to complete.
Through the Looking Glass: Cerebral Spinal Fluid Leaks & Ehlers Danlos Syndrome – an Alternate Reality to ME/CFS? – Health Rising by Caroline Christian | Dec 1, 2017
I saw Dr. Ian Carroll, an expert in cerebral spinal fluid (CSF) leaks from Stanford University, for the first time recently. He spent 1.5 hours with me and was very thorough, asking me a series of detailed questions he uses to assess patients for possible CSF leaks (see below).
I have ME/CFS and hypermobile Ehler-Danlos Syndrome (hEDS) and was referred to him by my autonomic specialist at Stanford because my orthostatic intolerance (OI) picture is a bit muddy and because hEDS, a connective tissue disease, is a risk factor and can cause aneurysms and spontaneous leaks from the dural sac (the tough outermost membrane of the spinal cord and brain). Continue reading
Avens Publishing Group – Ehlers-Danlos Syndrome or Disease? – July 2014 – Journal of Syndromes
Although first described in 1892 by Tschernogobow in Moscow, the medical history of Ehlers-Danlos syndrome (EDS) begins with Edward Ehlers’s description in 1900 in Copenhagen
Several avatars would come to stymie its identification to this day, despite its frequency, and foster confusion with other pathologies.
The first of these is the description by Alexandre Danlos (1908), who particularly emphasized a sign: excessively stretchable skin which would become solidly anchored in the minds of doctors who, even today, use it to rule out the diagnosis if it is not found. Continue reading
It’s Nothing Personal, Yoga, But You Ruined My Life: Raising Awareness of EDS
Perhaps it’s too harsh to say yoga ruined my life, but it has given me chronic pain and joint issues that forced me to completely change my daily routine.
All you yogis out there might be wondering- how is that possible?
Well, unbeknownst to me, yoga is the last thing a person with my condition should do. Continue reading
Living with Ehlers-Danlos Syndrome – Reviewed by Susha Cheriyedath, MSc – Oct 26, 2017
Ehlers-Danlos Syndrome, in short, EDS refers to a bunch of hereditary connective tissue disorders.
Connective tissues are a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in the human body. Continue reading
Cervicogenic Headache – Physiopedia
Due to our overly-stretchable tendons and ligaments, we with EDS often get these headaches that arise from misalignments of our upper cervical spine.
Cervicogenic headache is a chronic headache that arises from the atlanto-occipital and upper cervical joints and perceived in one or more regions of the head and/or face
This is my story about a hair-raising experience with outpatient surgery when no one realized that the anesthetic was ineffective due to my Ehlers-Danlos Syndrome.
I had my first outpatient surgical procedure when I was still in high school and needed a plantar wart removed from the sole of my foot. As the doctor injected the area with a local anesthetic, he explained he did these procedures all the time and I wouldn’t feel a thing. After a short wait, he began to dig out the deeply embedded wart with a hooked scalpel. Continue reading
Systemic Manifestations and Health-Related Quality of Life in Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome-Hypermobility Type – Sydney Medical School, Discipline of Biomedical Science – Krahe, Anne
Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome-Hypermobility Type (JHS/EDS-HT) is a hereditary connective tissue disorder associated with both musculoskeletal and systemic manifestations.
There is increasing recognition of the significance of the non-musculoskeletal manifestations of the disorder, such as
- orthostatic intolerance,
- gastrointestinal symptoms and
- psychological features, Continue reading
Routine bumps injured her joints, but finding the reason took half a century
Louise Carroll was just 7 years old when an accidental bump into a sofa turned into a major injury. Most kids might have ended up with a bruise or a scrape; Carroll dislocated her knee. Then she popped it back into place.
That is Carroll’s first memory of what would become a common occurrence: An everyday mishap causing major, and painful, damage to her knees, wrists, and other joints. Yet it took half a century — and consultations with doctors on the other side of the globe — to figure out why Carroll, now 59, was so prone to injury.
Just reading this far, I already suspected EDS. Carroll’s story is the typically sad and frustrating experience many with EDS have to suffer through. Continue reading
Upper crossed syndrome: Causes, symptoms, and exercises – August 2017
People with hypermobility (EDS) tend to develop this muscular imbalance, but it’s one of the few structural problems we can fix – with exercise.
Upper crossed syndrome refers to a particular configuration of overlapping overactive and underactive muscle groups in the neck, chest, and shoulders.
Typically, poor posture causes the syndrome, including the forward head posture, which occurs when people use electronic devices, read, and drive. Those with upper crossed syndrome usually have the same or similar set of postural irregularities that people may describe as slouching. Continue reading