Living with Ehlers-Danlos Syndrome (EDS): Living with Invisible Pain
- The Mindful Balance
- May 27
- 5 min read
Updated: Jul 22
Why It Matters: Ehlers-Danlos Syndrome EDS
Ehlers-Danlos Syndrome (EDS) isn’t rare—it’s rarely diagnosed. Many people live with chronic pain, fatigue, and strange symptoms for years without knowing why. EDS affects connective tissue, which means it can impact almost every part of the body—from joints and skin to internal organs.
For those of us with EDS, being heard and believed is often the first healing step. This post is here to help bridge that gap between mystery symptoms and understanding, whether you’re someone living with EDS, someone who loves someone who does, or a healthcare provider trying to understand it better.
The Breakdown: What Is EDS?
EDS Defined
Ehlers-Danlos Syndrome is a group of genetic connective tissue disorders that affect the structure and function of collagen, the protein that gives strength and flexibility to skin, joints, blood vessels, and organs.
The Most Common Subtype: hEDS
Hypermobile EDS (hEDS) is the most prevalent and the only subtype without a confirmed genetic marker yet.
People with hEDS often experience joint hypermobility, dislocations, chronic pain, fatigue, and digestive or autonomic issues.
Other Subtypes:
There are 13 subtypes in total:
Hypermobile EDS (hEDS)
The most common type; features joint hypermobility, chronic pain, and frequent dislocations. No confirmed genetic test yet.
Classical EDS (cEDS)
Characterized by stretchy, fragile skin and hypermobile joints. Caused by mutations in the COL5A1 or COL5A2 genes.
Vascular EDS (vEDS)
The most life-threatening type; involves fragile blood vessels, thin skin, and risk of organ rupture. Linked to COL3A1 gene mutations.
4. Kyphoscoliotic EDS (kEDS)
Marked by severe spinal curvature, muscle weakness, and fragile tissues. Caused by PLOD1 or FKBP14 gene mutations.
Arthrochalasia EDS (aEDS)
Involves extreme joint hypermobility, frequent dislocations, and fragile skin. Linked to mutations in COL1A1 or COL1A2.
Dermatosparaxis EDS (dEDS)
Very fragile, saggy skin with severe bruising. Caused by ADAMTS2 mutations.
Classical-like EDS (clEDS)
Resembles classical EDS but without atrophic scarring. Associated with TNXB gene mutations.
Spondylodysplastic EDS (spEDS)
Short stature, muscle hypotonia, and skeletal abnormalities. Linked to B4GALT7, B3GALT6, or SLC39A13 gene mutations.
Musculocontractural EDS (mcEDS)
Congenital contractures, fragile skin, and craniofacial features. Associated with CHST14 or DSE gene mutations.
Myopathic EDS (mEDS)
Includes muscle weakness and joint hypermobility. Mutations found in COL12A1.
Periodontal EDS (pEDS)
Early-onset severe gum disease and tooth loss, with mild joint symptoms. Caused by C1R or C1S mutations.
Brittle Cornea Syndrome (BCS)
Extremely fragile corneas and vision issues. Related to ZNF469 or PRDM5 mutations.
Cardiac-Valvular EDS (cvEDS)
Very rare; severe heart valve issues and fragile skin. Linked to COL1A2 mutations.
Comorbid Conditions
Many people with EDS also experience:
POTS (Postural Orthostatic Tachycardia Syndrome)
MCAS (Mast Cell Activation Syndrome)
Gastroparesis
TMJ, migraines, and more
Frequently Asked Questions (FAQ):
❓Who is most likely affected?
EDS is inherited, so it often runs in families. If one parent has EDS, there’s a 50% chance it can be passed down.
Women are more frequently diagnosed, especially in their 20s–40s, but EDS affects all genders.
Underdiagnosis is rampant, especially for people of color, men, and those with limited access to specialists.
❓Is it just being “really flexible”?
No. While joint hypermobility is a hallmark of hEDS, the condition involves systemic issues—including organ dysfunction, chronic fatigue, nerve pain, fragile skin, and slow healing.
❓Is there a cure?
No cure yet—but management is possible through:
Physical and occupational therapy
Bracing and mobility aids
Medications for pain, autonomic symptoms, and inflammation
Lifestyle adaptations
❓How is it diagnosed?
Diagnosis is based on:
Beighton Score (measures joint hypermobility)
Family history
Clinical criteria specific to each subtype
Genetic testing (available for most subtypes except hEDS)
My Journey:
Before I was diagnosed with hEDS, I spent years being told I was “just anxious,” “too sensitive,” or “overreacting.” When I started falling down, I knew something was wrong—my body felt like it was unraveling slowly, with unexplained pain, joint issues, and fatigue that no one could explain.
Finally receiving a diagnosis gave me validation—but it also opened a door to complex grief. I had to let go of old versions of myself and learn how to live with my body, not against it. That included learning about POTS, MCAS, mobility aids, flare management, and how to advocate for myself in a medical system that still has a long way to go.
Living with EDS has taught me to move slower, listen deeper, and become more compassionate with my limits. And now, I share that path with others who might still be searching.
Your Turn:
If you suspect you or someone you love might have EDS, here are a few things you can do next:
🔍 Learn More:
EDS Toolkit for Healthcare Professionals
Look up the Beighton Score and hypermobile EDS diagnostic criteria
✍️ Journal Prompt:
What symptoms have I been minimizing that may actually be asking for compassion or attention?
💬 Start a Conversation:
Have you been gaslit by doctors before? You're not alone.
You can start by sharing this post or asking someone, “Have you ever heard of EDS?”
As always, follow us on our Instagram page, our Pinterest page, and tag us using #TheMindfulBalanceToolkit.
Until next time,
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