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Test Your Ehlers-Danlos Syndrome Knowledge With These 10 Myths and Facts

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If you live with Ehlers-Danlos syndrome (EDS), you probably already know a lot about the condition. After all, you live with it. You’ll know it can cause serious and painful joint dislocations, make every bumped leg turn into a rainbow-colored bruise or lead to other chronic conditions like digestive issues or postural orthostatic tachycardia syndrome (POTS).

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

There’s a good chance it might have taken a lot of advocacy on your part to get an EDS diagnosis in the first place. You certainly already know more about EDS than the average person and maybe even more than some doctors. But we wanted to know just how well you really know EDS, from genetics to how it’s diagnosed and more.

Can you tell whether these 10 EDS statements are facts or myths? Test out your knowledge below!

(Use the arrows under the photo to flip to the answer.)

1. Myth or fact? Classic Ehlers-Danlos syndrome is the most common type of EDS.

Over the years, doctors classified EDS into subtypes based on the collagen genes affected and your symptoms. Currently, there are 13 agreed-upon subtypes of EDS with different sets of common symptoms and associated collagen gene changes. Classical Ehlers-Danlos syndrome (cEDS) was the first type of EDS identified in the 1960s and is one of the most common types.

MYTH: The above statement is false because while classic EDS may have been the first type of EDS identified, it is not the most common form of the condition. Hypermobile EDS is the most common EDS type. An estimated 80 to 90% of those diagnosed with EDS have the hypermobile type, approximately 1 out of every 3,000 people or 2.25 million people worldwide. Classical EDS is estimated to be the second most common type. It occurs in approximately 1 out of every 20,000-40,000 people.

Learn more about the subtypes of EDS: What Are the Types of EDS?

2. Myth or fact? The only way you can get EDS is if someone in your family also has it.

Genetics play a major role in EDS, and the only way you will have EDS is if you have certain changes or mutations in your collagen genes. It’s these changes in your collagen genes that cause your EDS symptoms, like overly flexible joints, easy bruising or stretchy skin. However, genetics can be complicated — not only do you inherit specific genes from your parents but those genetic codes need to be copied over from your parents to you.

MYTH: Because your specific genetics are controlled by what genes are passed on from your parents plus how well those genes get copied, the above statement is actually false. Genetics doesn’t just mean inherited from your family. You can also have what’s called a de novo (or new) case of EDS, which happens during conception. If your parents’ collagen genes are copied wrong, you may end up with the same gene mutations that cause EDS, even without a family history of the condition. Some experts believe up to 50% of EDS cases may be “de novo” as opposed to inherited from your family.

Learn more about how genetics impact EDS: What Causes EDS?

3. Myth or fact? Experts know which genes cause all 13 subtypes of EDS except for one subtype. 

We know that genes play a major role in why you get EDS and what subtype you have. You have multiple collagen genes in your DNA, which governs everything from the structure of your body to how tall you might grow and what other conditions you are more likely to get. All 13 EDS subtypes have a genetic root cause.

FACT: If you said the above statement was true, you are correct. Experts know the exact genes and in some cases several genes, that cause 12 of the 13 subtypes of EDS. However, experts haven’t identified exactly which gene — or most likely genes — that cause hypermobile EDS (hEDS), the most common subtype. The hypermobile subtype of EDS is probably caused by changes in several different genes that experts still are working to identify.

Learn more about EDS subtypes and genetics: Genetic Diagnosis for EDS Subtypes

4. Myth or fact? Genetic testing is never used to help make a hypermobile EDS diagnosis.

It is true we do not know which genes in particular cause hypermobile EDS (hEDS), even though it’s the most common type of EDS. When your doctor is making an EDS diagnosis and suspects hEDS, they will likely use a combination of your medical and family history and your symptoms to find answers. It’s important to determine your subtype to find an effective treatment plan.

MYTH: The above statement is a myth. Experts can’t currently use genetic testing to confirm the hypermobile subtype of EDS because we don’t know what genes cause the condition. However, sometimes your doctor (or you) might request genetic testing to rule out the other EDS subtypes to help make an hEDS diagnosis. Some EDS subtypes, like hEDS and the classic EDS subtype, have similar symptoms — very flexible joints, stretchy skin and easy bruising. By ordering genetic testing, your doctor can see if you do have changes in the gene that causes classic EDS and rule out hEDS.

Learn more about how to get an hEDS diagnosis: Diagnosing Hypermobile EDS

5. Myth or fact? The only doctor who can do genetic testing for EDS is a specialist doctor, a geneticist.

Because EDS is a genetic condition, your doctor may want to have genetic testing done to help determine if you have the condition or what EDS subtype you may have. We already know doctors can diagnosis 12 of the 13 EDS subtypes using genetic testing and rule out hypermobile EDS. But is a specialist genetics doctor the only person who can do genetic testing?

MYTH: While you may want to visit a doctor who specializes in genetics, a geneticist, the above statement is a myth. Any licensed medical doctor with an M.D. or D.O. degree can order genetic testing and get back the results to go over with you. It’s also important to know that even with health insurance, genetic testing can be expensive (costing $100 to $2,000 or more). Talk with your doctor if you’re worried about the cost before they order (or do) genetic testing.

Learn more about EDS doctors and specialists: Treatment Specialists Who Can Help

6. Myth or fact? Doctors use a Beighton test score to diagnose how stretchy your skin is.

One of three hallmark symptoms of EDS — stretchy skin, overly flexible or hypermobile joints and easy bruising — your skin texture and elasticity will be important when getting an EDS diagnosis. This is especially true if your doctor suspects you have the hypermobile subtype of EDS, which can’t be easily confirmed with a genetic test like the other 12 subtypes.

MYTH: The Beighton score is used to help diagnose EDS, but the above statement is a myth. The Beighton score measures your joint flexibility, not your skin elasticity. Your Beighton score is based on how far you can flex through five different movements, including pinky fingers, thumbs, elbows, knees and spine stretches. You can score up to nine points, and confirmation of generalized joint hypermobility will depend on your age. Before puberty, a Beighton score of six indicates you are hypermobile, while after puberty until age 50 requires a score of five.

Learn more about how your doctor diagnoses hEDS: Diagnosing Hypermobile EDS

7. Myth or fact? Many people with EDS experience eye changes or vision issues.

Collagen is everywhere in your body, from the ligaments and tendons around your joints to the tissues holding your organs in place, right down to your bones. Because collagen, a connective protein, is so widespread, depending on your EDS subtype, there are many symptoms you could experience — more than 100 symptoms in fact.

FACT: The above statement is indeed a fact. In particular, people with EDS will experience changes in the size and shape of your eyes’ cornea. According to the National Eye Institute, the cornea is the clear, outer layer of your eye. It’s typically shaped like a dome and helps you focus your vision. Depending on your EDS subtype and symptoms, you may experience a variety of eye issues, including a thin cornea, a cone-shaped cornea that causes vision problems or nearsightedness or farsightedness.

Learn more about EDS symptoms: What Are the Symptoms of Ehlers-Danlos Syndrome?

8. Myth or fact? A majority of people diagnosed with hypermobile EDS experience digestive issues.

We already know collagen is everywhere and can, therefore, impact you from head to toe. While not necessarily caused by EDS, there are some conditions you’re more likely to get in addition to EDS because of the kind of symptoms you have. For example, many people with EDS experience dysautonomic conditions that lead to fainting or dizziness, cardiovascular issues and trouble breathing.

FACT: Unsurprisingly, one of the more common types of complications you may experience along with EDS, especially hypermobile EDS, are digestive issues. The above statement is true. Experts estimate approximately 75% of people with hEDS also experience digestive issues, from irritable bowel syndrome (IBS) to gastroparesis. These related digestive conditions can cause symptoms like nausea, vomiting and stomach pain.

Learn more about other conditions people with EDS can have: Related EDS Conditions

9. Myth or fact? Your EDS symptoms will always be exactly the same over the course of your lifetime.

EDS is a life-long condition — there is currently no cure, but there are many treatment options to help you manage your symptoms. EDS is also not a progressive condition, which means it doesn’t get worse over the years like Alzheimer’s disease or spread like cancer. But humans are not static creatures, which means your body is always changing.

MYTH: Like many health conditions, your EDS symptoms can and will change over the course of your lifetime, making the above statement false. As your body ages, the elasticity and flexibility of your connective tissues change. This natural aging process can impact your EDS symptoms and lead them to change over time. In addition, depending on your EDS subtype, your daily activities may put you at risk for stress, strain or injury, which will affect your symptoms over time as well.

Learn more about how EDS can affect you over time: Living With Ehlers-Danlos Syndrome

10. Myth or fact? If you’re struggling to find answers for living with EDS, you are not alone.

There’s a good chance you might not know many other people in your everyday circles who understand EDS. It can be hard to explain to others what living with it is like. Depending on your symptoms, EDS may be an invisible illness or disability — other people can’t “see” your symptoms — so they don’t understand why you might need accessible parking or other accommodations. All of this can be invalidating, and having a community of people who get it to turn to for support is important.

FACT: OK, maybe it’s cheesy, but if you said the above statement is a fact you are correct again. While it can be difficult living with a chronic illness that still isn’t well understood, even in the medical community, there are many other people out there living with EDS who are walking the same journey. You can find your fellow zebras here on The Mighty in our EDS community by posting a Thought or Question using the hashtag #EDS and read The Mighty’s Guide to Ehlers-Danlos Syndrome for up-to-date information on symptoms, diagnosis, treatment and more for living with EDS.

Learn more about available EDS resources: EDS Support and Resources 


Originally published: July 8, 2019
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