Ehlers-Danlos Syndrome

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Ehlers-Danlos Syndrome – My Cross to Bear

When I was in my teens, I started to experience many different problems and most of them were painful and obviously like anyone else, I went to my doctor.

And over the years I saw many different doctors and I was given many different diagnoses – none of which were correct. To add insult to injury I was mostly treated as being an hysterical female or that it was “All in my head.” I did get some pain control but obviously all that did was control the barest minimum of the pain symptoms.

It wasn’t until I was touching 40 that I came across a medical entry on Wikipedia and I had every one of the symptoms that it mentioned. I went to my doctor and I asked to be tested and so I was referred to a specialist. And there I was given a clinical diagnosis of Ehlers-Danlos syndrome. Never heard of it? You are far from alone! Believe it or not, most doctors have not come across it! This is what it is:

Ehlers-Danlos Syndrome (EDS) Explained

So… what is EDS? EDS is a rare genetic condition that weakens the body’s connective tissues (which hold everything together, like skin, joints, and blood vessels). This happens because the body doesn’t make collagen (a key building block) correctly. People with EDS often have very flexible joints, fragile skin, and other health problems. It’s named after the two doctors who first described it.

There Are Different Types of EDS

There are actually 13 different types; however, the most common ones include:

Hypermobile EDS (hEDS) – The most frequent type. Causes very flexible joints, chronic pain, and joints that dislocate easily. No specific gene test exists for this type yet.
Classical EDS (cEDS) – Makes skin super stretchy, easy to bruise, and scars oddly.
Vascular EDS (vEDS) – The most dangerous type. Blood vessels and organs can tear unexpectedly.
Kyphoscoliotic EDS (kEDS) – Causes severe curvature of the spine (scoliosis), weak muscles, and fragile eyes.

For me personally, it is a mixture of hEDS and cEDS.

Common Symptoms include:

Joints: Too flexible, painful, or dislocating often.
Skin: Soft, stretchy, tears or bruises easily, scars poorly.
Other issues: Fatigue, dizziness (especially from POTS—a condition that affects heart rate when standing), stomach problems (like IBS), and heart issues in some types.

What Causes EDS?

It’s genetic – meaning it’s passed down in families. Some types need only one parent to carry the gene (dominant), while others need both parents (recessive). Sometimes, it happens randomly with no family history.

Getting Diagnosed

EDS is often missed or confused with other conditions (like fibromyalgia or Marfan syndrome). Diagnosis involves:

A doctor checking joint flexibility, skin, and symptoms.
Family medical history.
Genetic testing (except for hEDS, which has no known gene marker yet).

Treatment & Management

There’s no cure, at least not yet, but symptoms can be managed with:

Physical therapy (to strengthen muscles and protect joints).
Pain relief (meds, gentle exercise, braces).
Heart monitoring (especially for vascular EDS).
Lifestyle changes (avoiding high-impact sports, protecting joints).
Mental health support (living with chronic pain is tough).

Living with EDS

Support groups (like the Ehlers-Danlos Society) help people feel less alone.

Educating doctors is key – many simply aren’t familiar with EDS.
Pacing activities helps prevent flare-ups.

The Bottom Line

Ehlers Danlos Syndrome is a complicated, often invisible condition that needs more awareness. Early diagnosis and the right care can make a big difference. Researchers are working to find better treatments and understand the genetics behind it, but until then there are thousands of us who will continue to suffer.

Hard and fast figures are difficult to come by. The estimate is that between 1 in 5,000 to 1 in 10,000 have EDS. That means between 34,000 and 68,000 in the USA alone. That may not seem many to you and you may think it’s not worth the cost to put resources into investigation, but believe me… you ask any sufferer what it means to them and they will leave you in no doubt just how important it is to find a cure.