Do you experience these symptoms?

"I always thought I was just clumsy."

Ehlers-Danlos syndrome (EDS), postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS) are inter-related diseases.

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Have you recently been diagnosed with Ehlers-Danlos syndrome but still have symptoms that don’t appear to be directly related? Do you have a friend who is incre

"I always feel like running away right after."

Looking for a book or resource on Ehlers Danlos Syndrome? Here you go!

Have you recently been diagnosed with Ehlers-Danlos syndrome but still have symptoms that don’t appear to be directly related? Do you have a friend who is incre

"Some people and doctors will never see us from the inside out."

You have been feeling sick for a very long time. Had many routine tests come back clear. Yet, you have been in pain for many months, maybe even years. You are still trying to navigate how to have …

Discover effective treatments for Ehlers Danlos Syndrome (EDS): relief from pain, joint support, and improved quality of life.

Dental hygienists are well positioned to identify, treat, and refer patients who present with suspected or confirmed EDS signs and symptoms.

What is MCAS? Nederlandstalige versie volgt.Continue reading

What Is Ehlers-Danlos Syndrome? Ehler-Danlos syndrome is a group of rare inherited disorders that affect the body’s connective tissues, especially the

Exercise is the best treatment we have for Ehlers-Danlos syndrome, but it's tricky to do it safely. Learn about the dos and don'ts for EDS exercise here.

"Some people and doctors will never see us from the inside out."

In recent years, an association between hypermobile Ehlers-Danlos syndrome (hEDS), mast cell activation syndrome (MCAS), and postural orthostatic tachycardia syndrome (POTS) has garnered attention and patients are increasingly presenting with this triad. However, a real relationship between these entities is unclear due to a lack of scientific validity. We conducted an extensive review of the literature using two different search strategies. A narrower strategy included 88 searches of various combinations of terms for each of the three conditions, yielding 19 unique papers. A broader search included 136 searches of various combinations of terms but included all forms of EDS and yielded 40 unique papers. Of these, only four and nine papers from the narrower and broader search strategies were original research articles. None of these papers resulted from a combination of the search terms for the three conditions. All three clinical entities are controversial in either existence or pathogenesis. MCAS is a poorly defined clinical entity, and many studies do not adhere to the proposed criteria when establishing the diagnosis. Patients previously diagnosed with EDS hypermobility type may not meet the new, stricter criteria for hEDS but may for a less severe hypermobility spectrum disorder (HSD). The pathophysiology of POTS is still unclear. An evidence-based, common pathophysiologic mechanism between any of the two, much less all three conditions, has yet to be described. Our review of the literature shows that current evidence is lacking on the existence of MCAS or hEDS as separate or significant clinical entities. Studies proposing a relationship between the three clinical entities are either biased or based on outdated criteria. The reason behind the purported association of these entities stems from an overlapping pool of vague, subjective symptoms, which is inadequate evidence to conclude that any such relationship exists.

PART FIVE: TREATMENT AND MANAGEMENT 11.0 Treatment and Management “Emotional support and behavioral and psychological therapy may help in developing acceptance and coping skills.” (Malfait et al., 2018). Early diagnosis is extremely important for an individual’s present and future health. In general, symptoms will be treated as they arise. Care is largely preventative – being

Ehlers-Danlos syndrome (EDS) is a group of disorders that affect connective tissues, such as: tissues that support the skin, bones, blood vessels, and other organs (2014, Genetics Home Reference). It is estimated that about 1 in 5,000 individuals worldwide suffer from EDS (Genetics Home Reference, 2014).

"Knowing all I know about EDS now I cannot believe they missed the signs..."

Ehlers Danlos Syndrome (EDS) is an illness with many symptoms resulting from a defect in the way collagen is produced. While there is no cure at the moment, there are ways to support collagen production in the body to decrease symptoms and help patients regain quality of life.

A list of braces for EDS - I will update as I find more.

The unsolicited comments disabled people receive on a daily basis are so predictable, you can use them to play Ableism Bingo. This article covers those many of those comments and where they come from.

"I didn't know it wasn't normal. As a child/teenager I just assumed everyone got this."

These products help our community relieve pain and deal with joint hypermobility.

“You know you have EDS when you roll more joints than Snoop Dogg, and I mean your ankle, not your medical Mary Jane.”