Category Archives: Resources

EDS diagnosis for general practitioners

EDS diagnosis for general practitioners – Alan Spanos MD Clinical Associate UNC School of Medicine Chapel Hill, NC – January 2018

Joint Hypermobility: Diagnosis for Non-Specialists

This article describes how physician generalists can make useful working diagnoses of most patients with hypermobility syndromes, and proceed with effective treatment for them.

It is primarily written for physicians. Individuals who suspect they may have a hypermobility condition may wish to read it through, and have their primary care practitioners use it to make a diagnosis.   Continue reading

Demanding Patient’s Rights (links for contacts)

The Pain Advocate’s Corner: Demanding Patient’s Rights (contact information by category) by Celeste Cooper

Celeste has a page of links to government agencies, professional societies, advocacy organizations, publications, and advocacy groups whom we can contact with our stories.

It’s time for a reawakening of patient centered care that embraces the ethical preservation of our right to choose. It is a moral obligation of all parties that all stakeholders are part of every process when discussing the treatment of pain.

If we want change, we are obliged to share our unique individual circumstances and our life encounters. It’s time to put into words our desires, needs and rights.

The following are links to allow each of us to do just that. 

CDC Top 10 Causes of death 2016

Is the CDC trying to hide the enormous scale of suicides lately?

By splitting up the total suicides by method – firearm, suffocation, or poisoning – the numbers are far smaller. Even the three-way split still ranks them all in the top 10 causes of death.

If they counted all the methods together, which would make much more sense,  the total of 41,278 suicides would rank as the 2nd  leading cause of deaths.

That’s a sad reflection on life in the US – so bad that so many cannot tolerate it anymore. They are willing to give up life itself to escape what has literally become unbearable.   Continue reading

For Research: Sources of Current, Reliable Opioid Data

Covering opioids with data – By Charles Ornstein, ProPublica – (With assistance from many)

There are multiple ways of covering the opioid epidemic, but most rely on having current, reliable data to track how its evolving and the toll it’s taking. This tip sheet will help provide data sources on

  1. How opioids are being prescribed across the country,
  2. Deaths and hospitalizations linked to opioids, and
  3. Treatment for opioid abuse and addiction, including doctors who are certified to prescribe buprenorphine.

Moreover, there are a variety of state and local resources. If you find others, please send them to charles.ornstein@propublica.org.

The thoracolumbar fascia: anatomy and function

The thoracolumbar fascia: anatomy, function and clinical considerations – free full-text /PMC3512278/ – J Anat. – 2012 May 27.

In this overview, new and existent material on the organization and composition of the thoracolumbar fascia (TLF) will be evaluated in respect to its anatomy, innervation biomechanics and clinical relevance.

The integration of the passive connective tissues of the TLF and active muscular structures surrounding this structure are discussed, and the relevance of their mutual interactions in relation to low back and pelvic pain reviewed.

The TLF is a girdling structure consisting of several aponeurotic and fascial layers that separates the paraspinal muscles from the muscles of the posterior abdominal wall.   Continue reading

37 Links to stories, articles, and more on the opioid crisis

37 Links to stories, articles, papers and more on the opioid crisis – From Local Channel 8 LasVegasNow.comUpdated: Nov 07, 2017

Turns out, some folks are aware that there’s another side to the story. This is a list of links to stories from our side of the opioid issue, published by the TV station LasVegasNow.com:

50 Resources to Help You with Chronic Pain

From A to U, here are 50 organizations you can go to for information, help and resources to help you manage the challenges of living with chronic pain.

This might be the most complete list I’ve found, with listings for the science-minded, like Chronic Pain Research Alliance (www.chronicpainresearch.org), to the humerus (for young people) Stupid Cancer Association (www.stupidcancer.org)

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.

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