Specialists

This is a list of potential specialists who may be required for your medical team and each does. Specialist doctors require a referral to see be seen. These referrals can be made from your General Practitioner (will last 12 months) or another specialist (will last 3 months). You will need to get a new referral each time your referral expires. So ensure your referrals are up to date. Most specialists will let you know if you need an updated referral for your next appointment - especially if it's a few months in the future.

While specialist work within one specialised area of the body there are still hundreds of medical disorders within each speciality. So that doesn't mean they will know about EDS and may only work with very specific issues (subspecialties) that they mainly deal with. It's important to ensure you are seeing a specialist with awareness and experience with EDS. Your GP or other specialists may have some ideas on who is best to see as do a lot of support groups through other EDS patients' experiences. Caution is needed with recommendations as just because one doctor worked well with one patient does not mean they will be good for you and vice versa. Sometimes personality will be a big factor for patients and they will rate their experience based on this. Your experience with the doctor may vary greatly.

If you are a specialist and/or allied health professional who works with Ehlers-Danlos Syndromes and want to be part of our Health Professional List available on our support group please go here

Cardiologist

Gastroenteologist

What is Ehlers-Danlos Syndrome?

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
How many types of EDS are there?

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
How do I get diagnosed?

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.
Is EDS rare?

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.
I have hypermobile joints - do I have EDS?

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.
Is EDS Fatal?

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.
What is the Ehler-Danlos Syndromes awareness ribbon?

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.
Will EDS get worse over-time?

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.
Whats the difference between Hypermobile Spectrum Disorders and Hypermobile EDS?

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

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.
Can I have more than one type of EDS

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.
Can I get the Disability Pension/NDIS with EDS?

While EDS is not usually listed immediately as disabling due to it being a disorder on a spectrum of severity it can cause disabling symptoms in some individuals. Those people have gone on to obtain the Disability Pension and NDIS in Australia. Some have found issues accessing disability help due to the lack of knowledge on EDS. Please check out our page about the NDIS/DSP for a simple rundown and some hints.
Is EDS a disability?

There is no definitive answer here as Ehlers-Danlos Syndromes are a huge spectrum and can range greatly on their level of impact. Some people are able to live perfectly normal lives with no or minimal impact due to their EDS. Others have significant functional impairment and disability due to their symptoms. EDS itself is not immediately considered a disability but it CAN cause disabling symptoms in individuals. Those individuals can be greatly helped by government schemes such as Disability Pension and NDIS.
When is the awareness month?

The Awareness month for all Ehlers-Danlos syndromes occurs on May of each year. Within this awareness month there is a Vascular EDS awareness day (Wear Red for vEDS) which is the third Friday of May.
What is the awareness colour/ribbon?

Ehlers-Danlos Syndromes for many years has been using a black and white zebra stripe pattern as the awareness colours on our ribbon. The zebra is used based on the medical quote "If you hear hoofbeats this horses not zebras". Meaning it's more likely to be something common than a rare disorder. However, more 8% of Australians have some form of rare disease/disorder so there is a good chance that doctors will meet someone with a rare disease in their career so they should always still consider those people with rare diseases like Ehlers-Danlos.

General Physician

Geneticist

Neurologist

Neurosurgen

Immunologist

Pain Specialist

Rheumatologist

Sleep Doc