Multiple symptoms & treatment failures, yet undiagnosed:

Could you have HSD/hEDS and not even know it?

Do you....

• know a little about HSD, but want to know more?
• think you may have HSD, but want to be sure?
• have HSD, and want help getting it diagnosed or managing it?
• have HSD, and want to learn how to manage it?
• know someone with HSD, and want to know how to help them?

This site is dedicated to speaking with substance behind what is said—sifting HSD fact from fiction to reveal truth, so we can make informed decisions while managing our symptoms. Every statement made on this site was based at the time of writing on valid, reliable sources (mostly peer-reviewed primary research papers, as well as some talks, books, or articles by HSD experts) [see the resources page for the cited papers].

Q & A

Why have I never heard of HSD?

Hypermobility in joints only started being assessed around 1960, hypermobile Ehlers-Danlos Syndrome has only been recognized by medical researchers as a distinct medical condition since the mid-2000s, and Hypermobility Spectrum Disorder only began to be diagnosed by practitioners around 2010. Prior to that (and even now, by doctors trained in an earlier era), many symptoms that are now known to indicate HSD were labeled “idiopathic” (because the cause was unknown) or were diagnosed as conditions reflecting the symptom (e.g., hypoglycemia, insomnia, IBS, etc.) rather than a cause. We simply know more now than we used to.

Why has no one in my family ever been diagnosed with this “hereditary” condition?

On the one hand, hEDS has long been known to run in families—even now a family history is one criterion for diagnosis. On the other hand, however, because less severe cases were rarely diagnosed prior to 2010, just because no one was formally diagnosed doesn’t mean they didn’t have it. A family history of certain “idiopathic” conditions (those now known to indicate HSD) is now considered suggestive.

If one of my relatives has been diagnosed with HSD, does that mean I have it too?

No, but it means you could. Rather than being dictated by a single genetic mutation, such that you either have it or you don’t (i.e., single-gene inheritance, like sickle cell anemia), HSD stems from a combination of environmental factors and mutations in multiple genes (a multifactorial inheritance disorder, like breast cancer). So just because your aunt had HSD symptoms and your cousin has been diagnosed does not automatically mean you have or will have HSD—but it does indicate that you have a genetic predisposition or susceptibility to developing it.

How could I have HSD if neither parent ever really complained of HSD symptoms?

First, everyone has a different constellation of symptoms, many of which may be attributed to other causes. Second, everyone has a different severity of the condition due to the combination of nature (you are the product of a unique mix of two parents) and nurture (e.g., environmental exposure). Third, previous generations didn’t talk (let alone complain) so much about their medical conditions—especially rather private ones (e.g., prolapsed bladders, hemorrhoids, pain with sex, or even memory problems). So, if you can (perhaps anonymously), survey your family members about their symptom histories.

How could I have HSD if I’m not a klutz?

Although poor coordination is a common hallmark of HSD, research shows that we are capable of motions that are just as accurate as anyone else (i.e., we can hit the ball) ^{[Clayton et al. 2021]}. Rather, it is our precision that is poor (i.e., we don’t hit it every time), which is something that can be improved through training. So, you may have simply practiced your way to good coordination.

How could I have HSD if I’ve only ever had a couple symptoms?

Maybe you don’t! On the other hand, if you’re under 50 you may simply not have had the time (because some symptoms get worse with age) or life exposure (because symptoms can worsen following trauma or viral infection) to have yet accumulated enough symptoms to point toward HSD. Further, early compensating mechanisms (e.g., high muscle mass or dietary avoidance) can—fortuitously—forestall the development of some symptoms. But make sure you are honestly evaluating your symptom history—you may have had more HSD-associated symptoms than you realize.

Why did my doctor shrug off my inquiry about HSD?

The majority of medical professionals working today were trained before the era of HSD-awareness. If they were taught anything at all, it was a single lecture on the most extreme cases of one of the other types of Ehlers-Danlos Syndrome—which means that they will be looking for the wrong symptoms. In other words, not only are they unlikely to diagnose HSD when it presents, but they are in fact quite likely to mis-diagnose by rejecting the possibility of hEDS simply because they are confusing it with other types of EDS. If you suspicion that you have HSD and your primary physician either doesn’t know what you are talking about or pooh-poohs the idea, then seek out an HSD-savvy physician to get a more reliable diagnosis.

Why should I bother to get diagnosed with HSD?

True, there is no cure, and most physicians won’t be able to help you much, but the longer you can postpone the development or progression of some symptoms, the less likely they are to become disruptive and erode your quality of life. Further, once you recognize the likely cause of your symptoms, the better able you will be to deflect maltreatment by well-meaning but HSD-ignorant doctors (e.g., wrong diets, unnecessary surgeries, dangerous therapies), as well as to better proactively manage your symptoms.

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