Tag Archives: EDS

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.


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

Hypermobility Syndromes and Chronic Pain in Children

This article goes into great detail outlining the consequences of hypermobility syndromes in children, causing chronic pain, significant disability, and a reduction in quality of life.

When flexibility is not necessarily a virtue: a review of hypermobility syndromes and chronic or recurrent musculoskeletal pain in children – 2015 Oct – free full-text PMC4596461

Chronic or recurrent musculoskeletal pain is a common complaint in children.

Among the most common causes for this problem are different conditions associated with hypermobility   Continue reading

Pain Management in Patients With Hypermobility Disorders

Pain Management in Patients With Hypermobility Disorders: F… : Topics in Pain Management – Topics in Pain Management: July 2017Linda Stapleford Bluestein, MD – Continuing Education (CME) Activity

Learning Objectives/Outcomes: After participating in this CME/CNE activity, the provider should be better able to:

  1. Describe the various types of hypermobility.
  2. Identify signs and symptoms of hypermobility spectrum disorders.
  3. Develop treatment plans for patients with hypermobility disorders that address their specific and unique needs.

Chronic musculoskeletal symptoms account for a vast amount of health care utilization and are a leading cause of impairment and deterioration of quality of life.   Continue reading

Lab-grown cartilage as strong as natural

Lab-grown cartilage as strong as natural | Science Codex | June 17, 2017

This could finally be a solution to replace defective deteriorating cartilage in joints of patients with connective tissue disorders. Perhaps the same methods could eventually be used to grow sturdy tendons and ligaments for us too.

Lab-grown cartilage grown shows similar mechanical and chemical properties to natural cartilage, which allows our joints to move smoothly, according to a new study.

The biomedical engineers from University of California, Davis, created a lab-grown tissue similar to natural cartilage by giving it a bit of a stretch, they wrote in their Nature Materials study.   Continue reading

Chronic fatigue in EDS Hypermobile type

Chronic fatigue in Ehlers–Danlos syndrome—Hypermobile typeHakim – 2017 – American Journal of Medical Genetics Part C: Seminars in Medical Genetics – Wiley Online Library


It is the authors’ opinion that the criteria used for diagnosing CFS and hEDS are inadequate and contribute to diagnostic confusion.

To meet a diagnosis of CFS, fatigue must be “unexplained by other conditions.”

Therefore, a diagnosis of hEDS must exclude a diagnosis of CFS.

However, hEDS is likely to be substantially under-diagnosed and it is likely that some patients diagnosed with CFS may meet or would previously have met the criteria for diagnosis of hEDS.   Continue reading