Tag: EDS/HSD Awareness Month

on being a zebra (unicorn)

May is EDS & HSD Awareness Month. EDS stands for Ehlers-Danlos Syndrome and HSD for Hypermobility Spectrum Disorder. They are a group of inherited connective tissue disorders that remain under-diagnosed and under-treated. Case in point: I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) in January at the age of 65, making sense of decades-worth of unexplained symptoms.

The Ehlers-Danlos Society uses the zebra as a symbol of the EDS/HSD community because there is a saying among the medical community that “when you hear hoofbeats, think horses, not zebras” but, sometimes, there really are zebras. Zebras also each have their unique stripe pattern, in the same way that people with EDS/HSD have their own unique presentation, depending on how their collagen and connective tissue is impacted across different body systems at that particular time in their life. The medical system in the United States and in many other countries tends to divvy medical care to specialists who only look at one body system but connective tissue disorders are easier to recognize if one takes a more integrative approach.

And a fun zebra fact: A group of zebras is called a dazzle, which leads to the Ehlers-Danlos Society saying, “Together, we dazzle!”

As I’ve continued to research hEDS, I’ve been engaging in personal forensic diagnostics. So many things I have experienced in my life make sense now that I know of my genetic inheritence of hEDS. For example, I developed tendon problems in my elbow as a young teen which impacted my abilities as a pianist and organist. When I eventually had to resort to surgery in my thirties, the outcome wasn’t as expected and I had to give up playing. I now understand that this was due to my hEDS inherited collagen defects.

My IBS, IC, endometriosis, vulvodynia, pre-term labor, allergies, mast cell activation disorder, cervical instability, near-sightedness, depression/anxiety, cerebellar ectopia, sleep apnea, early gall bladder disease, hiatal hernia, acid reflux, chronic fatigue, diverticulosis, chronic kidney disease, sensitive skin, joints that bend more than expected, and more all have a connective tissue component and are more likely in people with EDS/HSD.

Daughter T gave me the zebra unicorn pin as a gift. While the zebra is the symbol of EDS/HSD, adding the unicorn element helps to play up the uniqueness of each individual.

And it’s super cute!

The point is that another person with hEDS could exhibit a totally different set of symptoms from mine or we could share some symptoms and not others. It just depends on which connective tissues are compromised and how much at that particular time. Other factors are involved, too, like age, activity level, hormone and endocrine function, etc. It adds to the zebra-unicorn element and takes a thoughtful and informed practitioner to pick up on the possibility of an underlying connective disorder behind all the symptoms of different body parts.

In December, there will be an update to the EDS/HSD diagnostic guidelines. My hope is that the medical community will use these and the best practices guidelines that will follow in spring 2027 to finally look more comprehensively at their patients and diagnose and help them at much younger ages than currently.

Some people are also under the mistaken impression that it doesn’t do any good to give a diagnosis when you can’t cure the disorder. While it’s true that we can’t current treat the genetic cause, there are treatments to help alleviate many of the symptoms. It’s also imperative for practitioners to know the EDS/HSD status for anyone who is contemplating surgery. Surgeons need to know about connective tissue differences so that they can compensate for that during the procedure and the recovery protocols or, perhaps, decide that surgery is not appropriate. Many EDS/HSD patients also need long-term physical therapy to help them function; it makes a huge difference if physical therapists are knowledgeable about connective tissue disorders so that they help rather than hurt.

As I continue my journey with hEDS, I will keep you posted here at Top of JC’s Mind. If we are super-lucky and we find effective treatment for my brain fog and fatigue, I may even post more regularly.

I will, though, always remain my unique, zebra-unicorn self.

One-Liner Wednesday: EDS shirt

May is Awareness Month for Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder so I got a shirt!

Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2026/05/20/one-liner-wednesday-summer/

EDS/HSD Primer

May is EDS & HSD Awareness Month and I promised to do some posts on it. I had hoped to get this first post out earlier in the month but I’m having some difficulties with an hEDS flare, which has slowed me down a bit.

Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) are heritable connective tissue disorders. There are 13 types of EDS. In 12 of those types, the exact genetic cause has been identified. Some of these types are very rare, affecting less than one in a million people. The most common form of EDS is hypermobile (hEDS), which is known to be inherited in an autosomal dominant pattern but appears to have a more complex genetic profile. The prevalence of hEDS is unknown because it is very often missed diagnostically. Case in point, I was diagnosed at age 65.

HSD is related to hEDS, usually involving fewer hypermobile joints than most people with hEDS. While some clinicians and researchers look at HSD and hEDS as separate disroders, others look at hEDS as occupying a certain segment of the hypermobile spectrum. In December, 2026, updated diagnostic criteria will be published, with best practices to follow in spring ’27. It will be interesting to see if hEDS and HSD will be merged into a single diagnosis.

One of the difficulties with obtaining a diagnosis with EDS or HSD is that they present in different ways in different individuals and can vary with age. All forms of EDS/HSD affect connective tissue, making it stretchier than is typical, often due to genetic impacts on the proteins involved in collagen production. Symptoms appear throughout the body and in different body systems. The charts at the top gives you some idea of how wide-ranging the symptoms can be. Thankfully, no one has all the symptoms but when tends to happen in the medical systems in most countries is that you see separate specialists for different body systems and there is no one with enough knowledge to integrate all the information and realize that connective tissue is the common denominator underlying it all.

Because EDS/HSD are genetic in origin, treatment revolves around symptoms. Physical therapy is often a big part of the treatment plan. There are medications, vitamins, and supplements to help certain aspects of the disorder, too. For example, I have a mast cell activation disorder as part of my hEDS and take several medications to help relieve respiratory and gastrointestinal symptoms.

Having an EDS/HSD diagnosis also allows your care team to keep an eye out for conditions that may develop, such as heart valve problems. It’s very important for surgeons to know if your connective tissues are not typical, as this may impact how a procedure is done or if it should be done at all. How well medications work and the dosages required can also differ. For example, my hEDS diagnosis explained why topical anethetics, like lidocaine, don’t work well for me.

I am hoping that, when the new diagnostic criteria are published, there will be increased awareness of inherited connective tissue disorders among both the medical community and the general public. For too long, symptoms have been dismissed as unrelated, idiopathic, stress-induced, hormonal, anxety-induced, unimportant, or imaginary. Like autoimmune diseases, these disorders are more prevalent in females than males, adding to the burden of being taken seriously and the dearth of studies.

The Ehlers-Danlos Society is an important organization spearheading study, training, education, and treatment of EDS/HSD internationally. Their website is a great source of information for patients and their families, as well as for clinicians and researchers. This month, as we raise awareness, my hope is that more people will learn about EDS/HSD and help those affected get the diagnosis, treatment, and validation they deserve.

SoCS: walks – or not

I used to enjoy going for walks with my spouse but haven’t been able to for most of the last 15 months due to my current health struggles.

You can read more about that here, in the context of today being the last day of EDS/HSD Awareness Month.

I used most of my energy getting that post together, here in this early morning timeframe, so this is a short Stream of Consciousness Saturday post. Linda’s prompt this week is “walk.” Please consider joining us or just stop by Linda’s site to wish her and her family well as they are recovering from illness at this point.