Before we delve into this question, let’s briefly recap what hEDS is.

hEDS is a genetic connective tissue disorder characterized by joint hypermobility, stretchy skin, and other related symptoms. It’s the most common type of EDS, accounting for approximately 90% of cases.

Due to its multi-systemic nature, this condition affects individuals in various ways and to differing degrees. If you would like to learn more, please visit our resource page where you can find a plethora of information on hEDS and its common comorbidities.

A misconception about hEDS
A popular misconception regarding hEDS is that it is a progressive disorder, meaning it worsens over time on its own. While progressive diseases (such as Alzheimer’s, Multiple Sclerosis, Parkinson’s Disease, ALS, and Huntington’s Disease), involve inevitable and often irreversible deterioration, hEDS does not follow the same pattern. The mutation itself does not worsen or change on its own over time.

Knowing this information can be very relieving but also confusing. If hEDS is not progressive, why do some individuals with hEDS experience symptoms that appear to worsen over time?

The Domino Effect
The domino effect is exactly what it sounds like. Imagine one symptom causing a cascade of other symptoms, resulting in a decreased “baseline” over time.

For example, let’s consider the following scenario:

You experience a painful subluxation → difficulty adapting your movement routine → body experiences some deconditioning → dysautonomia symptoms increase → difficulty obtaining adequate calories and nutritional elements → GI symptoms flare → sleep is impacted

…You get the point.

In this example, you may not have thought much about that initial subluxation, but then you find yourself bedridden for weeks due to disabling dysautonomia and GI issues. This cumulative impact can give the impression that hEDS is progressive.

How can this information help me?
Understanding the domino effect is crucial for effectively managing hEDS. By interrupting the chain reaction early on, we can prevent the dominoes from piling up.

Let’s revisit the previous example: finding a tolerable starting point for movement could potentially halt deconditioning, prevent worsening dysautonomia symptoms, reduce GI discomfort, and improve sleep quality.

What if you are already stuck in the domino effect? 

Even if you feel trapped in the domino effect, it’s never too late to regain control. This will look different for everyone and requires a highly individualized approach.

If you are struggling with this, we would love to see if we can help. Book a free discovery call, and together we can assess your situation and create a personalized plan to stop the domino effect, allowing you to reclaim your life.

Disclaimer: This blog post is intended for informational purposes only and should not be considered medical advice. Please consult with a healthcare professional for personalized guidance and treatment options for hEDS or any other medical condition.