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.
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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.
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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
Specialises in the diagnosis and treatment of the cardiovascular system. Ehlers-Danlos in some people can cause cardiovascular problems such as valve issues, aortic root dilation and most commonly a condition called Dysautonomia more specifically a type of Dysautonomia called Postural Orthostatic Tachycardia Syndrome. Some patients just require yearly screening through an ultrasound of the heart (echocardiography). Some types of EDS such as Vascular EDS may have higher cardiovascular needs.
Specialises in the skin, nails, hair and mucous membrane, Skin in EDS patients can be more delicate leaving it prone to abnormal scarring, stretch marks, and poor wound healing. Both Classical and Dermatosparaxis EDS have a lot of skin involvement.
Specialising in hormones, symptoms of EDS can become worse or begin at puberty due to hormones especially hormones such as relaxin (found during pregnancy) increasing hypermobility. Oestrogen tends to stabilise collagen and progestogens loosen it. So people may feel their hypermobility changes during cycles and as they age.
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EDS has also been associated with adrenal fatigue and other abnormal hormone levels. More research is needed, but it is an area that's been noted can have an impact on EDS individuals.
There does seem to be evidence that female hormones tend to lead to higher levels of hypermobility (this doesn't mean men can't have a significant hypermobility/disability due to EDS also). Testosterone which is generally higher in males has very little effect on collagen and helps increase muscle bulk which is helpful for the joints. Some transgender individuals have found changes in their symptoms related to hormone changes. Micro-dosing testosterone in females has been considered by some and positive results have been noted if the side effects that may cause increase masculine side effects (hair, lower voice etc) are tolerated by the individual.
Specialises in the digestive system. Gastrointestinal issues are widespread in EDS, but are poorly researched. Issues such as Gastroparesis (partial or full paralysis of the digestive system), Other common issues reported by patients include acid reflux, hernias, intestinal motility issues, and irritable bowel.
These are specialists caring for patients with unusual or difficult disorders. General physicians can also sub-specialise in areas listed on this page. It has been noted that some General Physicians within Australia specialising in Dysautonomia and Ehlers-Danlos are able to help with the diagnosing of EDS.
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They are different from General Practitioners "GP" who look after patients' everyday issues.
Specialises in testing for genetic medical conditions - such as Ehlers-Danlos Syndromes, This is an important specialist when it comes to the diagnosis of EDS as all types, excluding Hypermobile Type, have a known genetic component that can be tested for. Geneticists will assess, diagnose and manage a patient with congenital/hereditary issues and refer to other specialists as required. Genetic counselling may also be important when seeking out information on passing conditions like Ehlers-Danlos on to children.
Specialise in the diagnosis and treatment of issues related to the immune system. This can include autoimmune conditions, allergies and comorbid conditions such as Mast Cell Disorder.
Specialises in diagnosis and treating disorders that affect the brain, spinal cord and nerves through non-surgical interventions. Some issues seen within EDS include Intracranial hypertension/hypotension, Chiari Malformation, Spinal instabilities (CCI and AAI), kyphosis, Tethered Cord Syndrome, Movement disorders, Tarlov Cysts and other neuromuscular issues seen in EDS.
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Ref: https://www.ehlers-danlos.com/pdf/2017-Criteria-Nonexpert-PDFs/Neurological-and-Spinal-Manifestations-of-EDS-Nonexpert-S.pdf
Neurosurgeons specialise in the surgical treatment of neurological disorders. They see many similar issues that neurologists do for EDS (see above under neurologist), however, their treatment is to perform surgical interventions like nerve decompressions, fusions etc.
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Some of the more common issues with EDS that require neurosurgical intervention include Chiari decompression surgeries, spinal instabilities through fusion, and detething tethered cord.
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Ref: https://www.ehlers-danlos.com/pdf/2017-Criteria-Nonexpert-PDFs/Neurological-and-Spinal-Manifestations-of-EDS-Nonexpert-S.pdf
Obstetrics refers to pregnancy and gynaecology of the female reproductive system. Women with EDS have a higher rate of gynaecological problems. These can include pelvic pain, issues with bleeding, and painful intercourse.
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Pregnancy can have an impact on patients with EDS as a hormone produced called relaxin causes increased hypermobility and the general changes in hormone levels can have an impact. As progesterone also increased hypermobility hormonal contraceptives may cause issues in an EDS individual that needs to look into. Fertility issues, pelvic instability, premature delivery, and organ prolapse/rupture have been listed as possible complications.
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Urological problems can also occur with EDS (see Urology below)
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Ref: https://www.ehlers-danlos.com/pdf/2018-annual-conference/N-Blagowidow-2018Baltimore-OB-GYN-and-EDS-HSD-S.pdf
​https://ehlersdanlosnews.com/fertility-and-pregnancy-in-eds/
Specialise in disorders of the eye and treatment through both surgical and non-surgical interventions. The sclera and cornea are mostly made of collagen so it's an area that people with EDS can have issues with. Noted general ophthalmological issues seen with EDS include myopia, retinal detachment and glaucoma. Blue sclera is also a symptom seen in EDS and is a diagnostic criterion for Brittle Cornea Syndrome which has several ocular symptoms.
Some comorbid conditions like Intracranial Hypertension also have eye-specific issues that require an ophthalmologist or neuro-ophthalmologist.
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Ref: https://pubmed.ncbi.nlm.nih.gov/31133401/
Works with the diagnosis and treatment of muscles, bones, and joints. This can be an important specialist for hypermobile joints and the damage that occurs over time. Joint instability is the main issue treated by orthopaedic surgeons in EDS patients. When conservative treatments have failed surgery to stabilise the joint by an orthopaedic surgeon may be warranted. There does seem a higher failure rate among EDS patients so it's important to see an orthopaedic surgeon who is aware of the issues surrounding joint surgery with Ehlers-Danlos and it is done after conservative measures have been full tried.
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Ref: https://www.ehlers-danlos.com/pdf/2017-Criteria-Nonexpert-PDFs/Orthopedic-Management-of-EDS-Nonexpert-S.pdf
Pain management is usually a secondary qualification a doctor might have in conjunction with another speciality - usually anaesthetics. They specialise in the management of pain. They offer a wide range of treatment options that can include medications, injections, surgical, and referrals to other services such as psychology, physiotherapy and rehabilitation to improve pain. Pain is usually treated best by using a holistic approach as it impacts a great deal of life. Pain psychology can be a very important aspect (see Psychologist below). As there is no cure for chronic pain and it can have a massive impact on mental health. A holistic approach that includes pain psychology can result in better long-term results than just medication alone. There are some negative attitudes toward mental health and pain, but it's an extremely important area. Approaches like acceptance therapy have consistently shown positive results. Seeing a psychologist isn't meant to imply your pain is "all in your head" it's an ADDITIONAL treatment option to help navigate dealing with chronic pain. As with any doctor, but especially with psychologists, it is important to feel comfortable with them.
Mental Health is Health!
Psychiatrists are medical specialists (doctors) specialising in diagnosing and treating mental health disorders. Mainly through the prescribing of medications and other therapies.
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Some people may benefit from seeing both a psychiatrist and a psychologist.
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Some patients may feel they are being sent to a psychiatrist because the doctor thinks they are faking it. Even if this is the case it IS a speciality that can be helpful so please don't disregard this type of treatment just because the referring doctor isn't helping. A good psychiatrist can become an ally for the patient and help advocate for them for better medical treatment while helping them deal with living with chronic health/pain issues. They may also have ideas for support and help gain assistance with NDIS, Disability Pension and other government assistance programs. They can also be helpful when specialists are being problematic insisting on a psychiatric reason behind symptoms. As this can demonstrate that there is no psychiatric reason and such areas have been ruled out and your mental health is being looked after.
There has been research suggesting there may be a higher incidence of neurodiversity among people with Ehlers-Danlos Syndrome. So it may be that seeing a psychiatrist may be helpful for those potentially comorbid neuropsychiatric conditions proposed.
Specialise in diagnosing and treating joint and autoimmune conditions through non-surgical management. Rheumatologists are another important speciality seen by many with Ehlers-Danlos, though like all doctors don't assume they are all aren't up to date or focus on EDS enough to be able to diagnose/treat it when they might specialise in conditions like autoimmune conditions. While they frequently aren't directly treating EDS their knowledge helps coordinate the management with other specialists and do other tests. Some are also trained in the diagnosis of Hypermobile Ehlers-Danlos Syndrome. Double-check your rheumatologist has awareness of EDS.
Work with the diagnosis, assessment and management of patients with disability due to illness or injury. Rehab management can include improving posture and spatial orientation, building strength and motor control and stabilising joints. The focus is on increasing physical activity in a safe way with the hope to decrease pain and fatigue and increase strength and stamina. This may be done just after surgeries or maybe ongoing management,
Specialises in the diagnosing treating and prevention of conditions related to the respiratory system (breathing). Research is limited in this area, but there are some indications that EDS can result in some airway/respiratory-related issues. Including Sleep-disordered breathing (see sleep specialists below), higher incidence of asthma, and floppy airways.
Ref:
https://pubmed.ncbi.nlm.nih.gov/17412739/
Specialises in the diagnosing treating and prevention of conditions related to sleep. EDS has been related to a few sleep-related issues some include problems with sleep from pain and joint issues and non-restorative sleep. There is a noted increase in sleep-disordered breathing issues due to floppy airways. Anecdotally Narcolepsy and Hypersomnia have been noted but research has not identified if this is anything more than a coincidence. Finally, those with comorbid Dysautonomia can have sleep issues with what is suspected as adrenaline surges causing high amounts of arousal out of sleep and poor sleep quality.
Deal with the diagnosis, treatment and management of the urinary tract and male reproduction. Urologists may also be listed as urogynecologists who specialise in female urological issues. Bladder dysfunction can be a common issue seen in the EDS population. Issues can include problems with voiding, frequency/urgency and incontinence. Frequent urinary tract infections are a common urological issue seen in patients with EDS.
The most common test is urodynamic testing where (among other simple tests) a catheter is inserted and the bladder is filled with saline. This can test for a range of urological issues. Urological issues are a common symptom of those with Tethered Cord Syndrome a comorbid issue of EDS.