Tag Archives: EDS

Latest EDS Information – Fall 2017

Links to the best and latest information about EDS presented by over 20 experts. These numerous presentations address the many and varied implications of this connective tissue disorder.

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.

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Ehlers-Danlos Syndrome: A Challenge for Pain Management

Ehlers-Danlos Syndrome: An Emerging Challenge for Pain Management – Editor’s Memo—September 2017 – By Forest Tennant, MD, DrPH

Thank you, Dr. Tenant, for drawing attention to this terribly painful genetic syndrome that is completely ignored by so many pain specialists, even as it clearly causes increasing physical pain.

Until recently, Ehlers-Danlos Syndrome (EDS) was a name that elicited little relevance or urgency in the pain world.

Little did I realize that I had been treating more cases of EDS in patients who had been referred to my practice initially for more commonly recognized diagnoses such as fibromyalgia, spine degeneration, and resistant migraine.   Continue reading

Neuroinflammation: Underlying Cause of Chronic Pain

Neuroinflammation: Treating the Underlying Cause of Chronic, Severe Pain – Tori Rodriguez, MA, LPC – September 08, 2017

I’m pleased that EDS is known, at least to some doctors, to be so painful that it qualified for Dr. Tenant’s short list of “pathologic conditions that cause the most persistent or constant pain”:

Neuroinflammation due to microglial activation is the underlying cause of severe persistent or constant pain, and unless it is suppressed, no real treatment of the cause of pain can be realized,” Dr Tennant told Clinical Pain Advisor.

“Time has taught us that there is a relatively short list of pathologic conditions that cause the most severe, chronic pain — every pain practitioner should have awareness of these,” he added.   Continue reading

Could My Feet Be Causing [some of] My Chronic Pain?

Could My Feet Be Causing My Chronic Pain? – By Lisa Ellis – Apr 1017

Dr. Rothbart has an intriguing approach to foot pain, using insoles to shift the positioning of the foot to alter the signals it sends to the brain.

A healthy foot sends signals to the brain, which is used to regulate posture, says Brian A. Rothbart, DPM, PhD.

When the foot is structurally unstable, as in these two foot structures, the signals are distorted and bad posture results.

When the body is not properly aligned, it can cause related muscle and joint pain.  Continue reading

Structurally Unsound

Structurally Unsound – TMC News  – Sarrah Hannon wants to demystify Ehlers-Danlos Syndrome – By Mary Vuong | August 03, 2017

Sarrah Hannon once led an active life of triathlons, marathons and rock climbing.

Now she refrains from lifting a gallon of milk.

Hannon, 30, lives with Ehlers-Danlos Syndrome (EDS), a group of genetic connective tissue disorders. The most abundant protein in her body, collagen, is failing her.   Continue reading

Mast Cell Activation Disorder – Yes, It’s Real

Mast Cell Activation Disorder – Yes, It’s Real – Science-Based Medicine – by Steven Novella on May 31, 2017

I have been asked several times about Mast Cell Activation Disorder (MCAD) by people who think there are red flags that maybe this is a made-up disorder.

As I will review below, it is a legitimate and interesting disorder. What is more interesting, from an SBM perspective, is why people would question the diagnosis.

The educated and skeptical public cannot trust apparent experts when they say that a diagnosis is real because there are so many fake diagnoses (and fake experts) out there.   Continue reading

Widespread Effects of Defective Collagen

Collagen – Wikipedia – This protein, affected by Ehlers-Danlos and other connective tissue disorders, has multiple critical roles and gives structural support throughout the whole body.

Collagen is the main structural protein in the extracellular space in the various connective tissues in animal bodies.

As the main component of connective tissue, it is the most abundant protein in mammals, making up from 25% to 35% of the whole-body protein content.

Depending upon the degree of mineralization, collagen tissues may be rigid (bone), compliant (tendon), or have a gradient from rigid to compliant (cartilage).  Continue reading

Ehlers-Danlos Syndrome from MedlinePlus.gov

Ehlers-Danlos Syndrome from MedlinePlus.gov – a trusted site of the NIH with factual information (scientific and rarely wrong, not commercial, promotional, or fake)

Ehlers-Danlos syndrome (EDS) is a group of inherited disorders that weaken connective tissues. Connective tissues are proteins that support skin, bones, blood vessels, and other organs.

This means that EDS can affect almost any function of your body.

EDS usually affects your skin, joints and blood vessel walls. Continue reading

Small fiber neuropathy common in Ehlers-Danlos

Small fiber neuropathy is a common feature of Ehlers-Danlos syndromes. – PubMed – NCBI – 2016 Jul

Patients diagnosed with EDS underwent clinical, neurophysiologic, and skin biopsy assessment.

  • We recorded sensory symptoms and signs and evaluated presence and severity of neuropathic pain according to the Douleur Neuropathique 4 (DN4) and ID Pain questionnaires and the Numeric Rating Scale (NRS).
  • Sensory action potential amplitude and conduction velocity of sural nerve was recorded.
  • Skin biopsy was performed at distal leg and intraepidermal nerve fiber density (IENFD) obtained and referred to published sex- and age-adjusted normative reference values.  Continue reading

EDS in children: a longitudinal cohort study

The natural history of children with joint hypermobility syndrome and Ehlers-Danlos hypermobility type: a longitudinal cohort study. – PubMed – NCBI – 2017 Apr

This is only an abstract, but I also posted an important comment from Rodney Grahame below it.

The objective of the manuscript was to describe the natural history of complaints and disability in children diagnosed with joint hypermobility syndrome (JHS)/Ehlers-Danlos-hypermobility type (EDS-HT) and to identify the constructs that underlie functional decline.

Methods.:

One hundred and one JHS/EDS-HT children were observed over 3 years and assessed at three time points on the following:   Continue reading