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
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
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
Hypermobility Syndromes Association » Hormones & Hypermobility – By Alan Hakim, Updated August 2017.
Which hormones are involved?
A hormone is sometimes described as a ‘chemical messenger’ that is secreted from a gland, circulates through the bloodstream and, finally, reaches the organ at which it is directed where it exerts its effect.
Although there are many types of hormones, all of different structures, two main groups are relevant to hypermobility. Continue reading
I feel like many doctors resist Ehlers Danlos Syndrome (EDS) diagnoses for their patients… for a variety of reasons.
- They can’t fix it.
- It means admitting that they have wrongly dismissed symptoms as psychosomatic for decades.
- It answers too many questions at once.
- People who have it often have a lot of things going on and it feels to doctors like their patients are “diagnosis shopping.”
- Admitting that there is a legitimate source of chronic pain means another potential patient on opiates, which invites scrutiny.
These presentations from the 2017 Ehlers-Danlos Society Global Learning Conference are provided for your personal use.
The following presentations were those available to us as of September 21, 2017. Some sessions were also video-recorded; once the finished versions are available, those videos will be posted in our YouTube channel and linked here.
The presentations and materials remain the intellectual property of the presenters, and all rights are reserved to them. The Society does not control and is not responsible for the content of presentations.