Question 1

What is Ehlers-Danlos Syndrome?

Accepted Answer

Ehlers-Danlos Syndrome is a group of 13 connective tissue disorders. To read more go to our information on Ehlers-Danlos and the Types of Ehlers Danlos

Question 2

How many types of EDS are there?

Accepted Answer

Currently (as of 2020) there are 13 official types of EDS based on the 2017 International Diagnostic Criteria.
 
They are:
- Classical
- Hypermobile
- Vascular
- Classical-like
- Cardiac-Valvular
- Kyphoscoliotic
- Brittle Cornea Syndrome
- Spondylodysplastic
- Arthrochalasia
- Dermatosparaxis 
- Musculocontractural
- Myopathic
- Periodontal

Question 3

How do I get diagnosed?

Accepted Answer

Diagnosis depends on the type of EDS. 12 types of EDS are diagnosed by genetic testing. Hypermobile type is the only one that is a clinical diagnosis.
 
A Geneticist and/or Rheumatologist are usually (though not all doctors) the most educated in diagnosing hEDS.

Question 4

Is EDS rare?

Accepted Answer

As a whole, Ehlers-Danlos Syndrome is still considered rare (1 in 5,000). Within the subtypes, some are far rarer such as Vascular EDS which is between 1 in 50,000 and 1 in 200,000 and other types only have a handful of diagnosed people. Compared to the Hypermobile type which is the most common type some statistics have put it closer to 1 in 1,500-2000.

Question 5

I have hypermobile joints - do I have EDS?

Accepted Answer

People can have hypermobile joints and not have a medical/genetic disorder like Ehlers-Danlos Syndrome. Some people train their bodies to be more flexible for their profession which is different to being Hypermobile. Ehlers-Danlos has 13 different types and while joint hypermobility is seen in the majority of these it's not the main issue for every type. 
 
The Hypermobile type of EDS is where joint hypermobility is the main issue, however, it also impacts a lot of other areas of the body and requires more than just hypermobility in the joints (usually judged by the Beighton Scale) to be diagnosed. 
 
If you think you have EDS speak to your doctor as there are specific tests to take depending on the suspected type of EDS.

Question 6

Is EDS Fatal?

Accepted Answer

While there are some issues within EDS that can result in potentially life-threatening issues, most people with EDS have a normal life span.
 
One specific type - Vascular EDS does have a higher risk of fatal complications due to blood-vessel fragility. People with vEDS have a median life expectancy of 48yrs. Kyphoscoliotic type also has an increased risk of a lower life span due to vascular involvement and the potential for restrictive lung disease. These need to be discussed with your doctor and new research are improving outcomes.

Question 7

What is the Ehler-Danlos Syndromes awareness ribbon?

Accepted Answer

The EDS awareness ribbon has Zebra stripes. 
 
This is due to the medical quote: "When you hear hoofbeats think horses, not Zebras". Meaning it's likely a common issue presenting uncommonly rather than a rare condition. This is based on Occam's Razor. 
 
Many people with EDS often have difficulty getting a diagnosis due to this belief. However, people with rare disorders do exist and doctors need to make sure to consider them when trying to discover the diagnosis. 
 
This is a ribbon also used for Rare Diseases/Disorders.

Question 8

Will EDS get worse over-time?

Accepted Answer

Most of the common types of EDS cause frequent joint dislocations. Many of the problems associated with EDS are generally expected to get worse over time. However, medical advances and management can help decrease degeneration and may improve health.
 
Many with EDS have been able to maintain their health throughout their life. Improving overall health and keeping the body fit where possible. The outlook for EDS is improving over time with more knowledge. 
 
Please speak to your doctor about treatment options to help maintain your body.

Question 9

Whats the difference between Hypermobile Spectrum Disorders and Hypermobile EDS?

Accepted Answer

Hypermobility Spectrum Disorders (HSD) vs Hypermobile EDS (hEDS) differences lie in the stricter criteria for hEDS diagnosis. 
 
Treatment is essentially the same for both and the severity of issues can be seen across the spectrum (someone with HSD could be more disabled than someone with hEDS and vice versa). They are both parts of the spectrum in Joint Hypermobility. Which ranges from Asymptomatic Joint Hypermobility all the way to hEDS. There is still an ongoing discussion.
 
for more info check out the Ehlers-Danlos Society

Question 10

I've scored 5 or more on the Beighton Scale do I have EDS?

Accepted Answer

Maybe, the Beighton Scale is a tool used to diagnose joint hypermobility, not EDS. However, many types of EDS have Joint Hypermobility as PART of their diagnostic criteria. If you have a positive Beighton scale further assessment would be needed to see if you meet any of the other criteria needed for the diagnosis of EDS.

Question 11

Can I have more than one type of EDS

Accepted Answer

This is a very controversial question. Some groups say yes, that people can have multiple genetic defects. Others argue that one can only have one EDS type, especially seeing diagnostic criteria in some states that one needs to exclude other possible reasons/types. 
 
The answer is we don't know.

Question 12

I've seen..... on TikTok/Instagram, and now I think I have EDS what do I do?

Accepted Answer

For better and worse social media has increased the awareness and the popularity of Ehlers-Danlos. There is a lot of misinformation online and emphasis on hypermobility being equal to EDS. Hypermobility exists for many reasons and even 10-30% of the general population can have asymptomatic joint hypermobility. There are also several other disorders and reasons to have symptomatic joint hypermobility, including Marfan's, Hypermobile Spectrum Disorders, Loeys Dietz, trauma/injury to joints and even some specialists debating disorders like MCAS and even recent major global viruses causing joint hypermobility.

EDS is a genetic disorder, so it's likely to see these symptoms found in your family. It is also a disorder that is systemic, as connective tissue is found throughout the body. So if you are suffering from joint hypermobility it is important to look into what other potential symptoms/signs and if you are also presenting with these or signs/symptoms of other connective tissue disorders that have hypermobility as a symptom.

EHLERS-DANLOS
AUSTRALIA

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