EHLERS-DANLOS
AUSTRALIA

Some people may require assistive devices/technology to help them manage everyday tasks. These may be different utensils to eat, prepare food, write, etc. Adaptions to homes to make them safer and easier to access, special sleeping devices or beds. Adaptions/devices in the school and workplace could also be considered if they help improve daily life.

Mobility equipment may also be required. This can help with unstable joints, pain, balance issues, fatigue etc that may impact walking. These can be canes, walkers, crutches, walkers/rollators, scooters and wheelchairs. Care needs to be taken with some of these devices as using some can put pressure on other areas of the body (one-sided weight with canes, impact of wrists pushing wheelchairs etc).

An Occupational Therapist is an allied health professional trained to assess and prescribe such devices. There are also stores that carry a variety of devices you may not have considered. They are often open to the public (you may need to book a time) for walkthroughs.

A variety of splints and braces may be used to support and protect unstable joints. It is best to get braces fitted by physiotherapists/occupational therapists to ensure correct fit and use. As splinting can impact muscle tone it needs to be done under the care of a health professional.

Taping joints is also helpful with Kinesiology-Tape being a well-liked tape to help joints

Knees, SIJ, Finger splints (see silver ring splints), wrists, neck etc have a multitude of splints/braces available. Some may need their devices custom fitted by either the PT/OT.

What we eat is an important element for patients with EDS. Recent research papers have highlighted issues like lower protein consumption which can lead to bone health issues in EDS patients. Some EDS patients also have gastrointestinal issues such as Gastroparesis and Intestinal Dysmotility leading to nutritional deficiencies.

A Dietitian is a health professional who has studied for at least 4yrs and graduated from a University with an approved dietetics degree. An Accredited Practising Dietitian uses the science of food and nutrition to optimise health and has advanced knowledge and skills built around the National Competency Standard to prevent and treat disease. They are committed to ongoing training and education to remain accredited. Dieticians as an allied health practice can be seen without a referral but can be referred by a GP under a Chronic Disease Management Plan, claimed through Private Health or may be part of an NDIS plan to help with costs.

Nutritionists are not regulated in Australia and anyone can call themselves a nutritionist regardless of whether they have graduated from a nutrition course. Nutrition courses are available and these focus on promoting a healthier lifestyle through healthy eating, basic health advice, meal planning and general weight loss information. This is considered a base level of understanding concerning guidance on food and nutrition advice. They are not qualified to deal with patients who required specific dietary requirements or who have medical disorders.

Some professionals may undertake studies in both and advertise themselves with both labels. All dietitians are nutritionists and but not all nutritionists are dietitians.

These are allied health professionals who have a minimum of a 4-year bachelor's degree from an accredited university program. They offer a range of services including assessment, exercise programs, physical rehabilitation, health education, exercise counselling and behavioural coaching. They can help improve strength, flexibility and function working with a range of medical and chronic conditions.

With EDS movement is an important element to keep the joints mobile and minimise damage/dislocations. It is also important to exercise properly as hypermobility comes from stretching the ligaments over the muscles. Which can lead to muscles becoming tight to keep the joints stable and joints becoming unstable as ligaments are unable to stabilise. It is important to see an EP who understands hypermobility if not EDS specifically. They can work to help build and maintain function and rehabilitate after joint surgeries.

Exercise Physiology as an allied health practice can be seen without a referral but can be referred by a GP under a Chronic Disease Management Plan, claimed through Private Health or may be part of an NDIS plan to help with costs.

Is any therapy method that uses some form of water and can be as simple as taking a warm bath to relieve muscles to specialised exercise with a physiotherapist in a heated pool. There are multiple places this can take place like a whirlpool, hot tub and or physiotherapy tank and names these can be called include aquatic therapy, pool therapy or water therapy.

Hydrotherapy which is usually prescribed and rebated by private health is typically describing the type conducted by a physiotherapist. in a heated (33-36ºC) pool. Slow, controlled movements are the focus over aerobic type exercise to help rehabilitate the joint/injury.

Water is supportive so the weight of your body doesn't impact your joints. It also gives gentle consistent resistance to your joints to help improve your strength. Finally, the warmth of the pool can help relax soothe and ease pain in the joints.

For those with additional conditions like POTS, the heat of the pool may be difficult for them and consideration is needed. Some patients with MCAS may find they are allergic to the chlorine in the pool. If you can't swim this doesn't mean you won't be able to participate as many places are open to participants who can't swim as most of the exercises take place in the shallow region - but for safety it is obviously and advantage and some do require it.

Massage therapy can help people with Ehlers-Danlos (EDS) with pain and tight muscles. There are many different types/styles of massage and there isn't any specific research highlighting which type is better for EDS. Myofascial Massage is helpful for a part of our body called the fascia and softens and stretches hardened fascia causing pain.

It's important to see someone with an understanding and training in hypermobility as pain could be caused. Many physiotherapists and allied health either do massage or know someone they can refer to that can be helpful vs random massage parlours.

A variety of medications that are available usually need a medical doctor to prescribe and manage them. Over-the-counter (OTC) medication is helpful, but there are risks associated so your doctors need to be aware of what you are taking, including natural products as they may interact.

Medication may be used to help with acute/chronic pain by pain specialists, patients with comorbid conditions like dysautonomia (POTS), or MCAS may require medication to treat these. There are also medications for joint spasticity, urological, GI issues etc. There is a wide range of medications used due to how EDS can impact multiple areas in the body.

Many with EDS have a low level of vitamins due to poor absorption and may benefit from supplementation. It is important to get a blood test to investigate your vitamin levels before supplementing to ensure they are low as over-dosing of certain vitamins is possible. They also may interact with certain medications/anaesthetics so ensure you keep a good list of what you are taking to tell the doctor.

There are some protocols out there such as the Cusack Protocol. this has not been validated by medical doctors and created by a patient and their own research. this should be undertaken only with your doctor's knowledge. We do not endorse any protocol but acknowledge there are educated patients out there. Any medications, protocols supplements etc are done at your own risk.

Occupational Therapists (OT) are allied health practitioners who deal with people who need assistance with a range of difficulties with everyday tasks including physical, sensory, and/or cognitive problems. Their aim is to help identify strengths and barriers to independence and deliver solutions. This is done through activities, therapy, exercises and assistive devices/equipment. Everyday activities can range from self-care, work or school, social participating and engaging in the community. Occupational Therapists help with fine motor skills, cognitive skills, sensory processing and visual perception skills.

With Ehlers-Danlos Syndrome (EDS), an OT can help with finding solutions to doing tasks in a way or with assistive devices to minimise pain and dislocations. They are also commonly used as part of the NDIS application and ongoing assessment process. Mainly to assess the level of functional disability and make suggestions for help required and equipment suggestions.

Some OTs can specialise in areas such as the hands specifically and work specifically to find solutions for hand-related issues. Silver Ring Splints are frequently used by patients with EDS to help with finger-related instability. Some hand OTs have fitting equipment and training to allow them to fit these specific splints.

Occupational Therapy as an allied health practice can be seen without a referral but can be referred by a GP under a Chronic Disease Management Plan, claimed through Private Health or may be part of an NDIS plan to help with costs.

Pain management clinics are trained health professionals who work to improve pain through a holistic approach that aims to rehabilitate and restore function. This may include seeing medical specialists in pain management, medication reviews, physiotherapy, occupational therapy, psychology, interventional procedures (nerve blocks, stimulators etc), hydrotherapy, social support, sleep management etc.

These can be done through both in and outpatient sessions. The holistic approach tries to ensure all areas of your life are addressed to improve the management/acceptance of chronic pain.

There is not one path and a good pain management clinic will help find the best path for your needs.

Physiotherapy (PT) is considered a key treatment for the management of joint hypermobility in Ehlers-Danlos Syndrome. Physiotherapy can aim to improve weakness, tightness, strength, endurance and gross motor skills, restore function, addressing fatigue, pain proprioception and improve fitness joint range of motion.

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Some physiotherapists have created plans specific to EDS such as the Muldowney Protocol. Not all physiotherapists are trained to help joint hypermobility, so it is best to ask around and check qualifications/training.

As PT is an allied health practice it can be seen without a referral but can be referred by a GP under a Chronic Disease Management Plan, claimed through Private Health or may be part of an NDIS plan to help with costs.

For more info: Physiotherapy for EDS

Psychologists are allied health practitioners and are focused on treating mental health through therapies such as talk therapy, cognitive behaviour, dialectical behaviour therapy etc. They can also counsel people through major life events you don't have to be having a mental health crisis to see a psychologist you may see them to get help with your life or work direction.

There are subspecialties within psychology including neuropsychologists, health psychologists, clinical psychologists etc. Neuro and health psychologists may be the best subspecialty for working through living with a chronic illness. They can also assess and work with memory issues and test for learning difficulties. There are also psychologists who have taken further education specifically in pain management.

With Ehler-Danlos Syndrome it can be helpful to see a psychologist to deal with living with a chronic health condition and if one suffers chronic pain. There is also suggested to be a higher level of neurodiversity among people with EDS and seeing someone to be assessed and getting assistance may be helpful overall as part of a holistic approach to the mind and body approach of EDS.

As Psychology is an allied health practice it can be seen without a referral but can be referred by a GP under a Chronic Disease Management Plan, claimed through Private Health or may be part of an NDIS plan to help with costs. Psychologists can also be seen under a Mental Health Treatment Plan if your GP sees the need. This will subsidies the cost of up to 20 sessions - but initially, 6 need to be done and then a review is done if further sessions are required. Another option for subsidised mental health care is the Better Access Initiative through your GP which allows eligible support of 10 individual and 10 group allied mental health services a year.

There has been some negativity in society about seeing a psychologist and even some doctors have suggested that seeing a psychologist implies that they believe the person is faking the disorder or the pain is in their head. This is an outdated and harmful belief. Psychologists and Psychiatrists can be very powerful health professionals to have in your team to help your health and should be considered even if suggested in a poor way.

Don't let someone's poor suggestion stop you from seeing someone who could actually help you. A good mental health professional would be able to see if your symptoms are physical in origin and help support your claim with specialists to get help for them and stop blaming mental health issues.

Podiatrists are allied health professionals who deal with foot health and injuries. Podiatrists can analyse gait, help with foot care, and recommend and provide orthotics and footwear.

Many people with Ehlers-Danlos Syndrome (EDS) have issues with their feet including hypermobility in the feet, joint problems, foot pain impacting walking, overuse injuries, damage to joints, poor wound healing, spurs from tight muscles, poor foot alignment and much more. So there is definitely a role for a podiatrist for many patients who have EDS. Splints like AFOs, footwear suggestions, exercises, orthotics etc are all potential options to help with EDS foot problems. Podiatry as an allied health practice can be seen without a referral but can be referred by a GP under a Chronic Disease Management Plan, claimed through Private Health or may be part of an NDIS plan to help with costs.

Treating Ehlers-Danlos Syndrome "EDS" can require a holistic multi-speciality approach. As EDS can impact multiple different areas.

To see a list of potential specialists and what they do click here. There is no one "EDS Specialists" as connective tissue is found in all areas of our bodies. This also doesn't mean all areas of our bodies will have problems either. There are different types of connective tissue and how they operate.

Some patients may only need some allied health specialists and see a rheumatologist once a year for a checkup, others may need several specialists. Needs may also change over time - there is no one neat fit for all. Some specialists even have sub-specialisation or specialise in a small set of disorders. So you may have to look around and ask support groups for suggestions of specialists who work with EDS patients and understand the issues.

Speech pathologists diagnose, treat and study disorders of speech and language which can include but are not limited to include problems with communicating, speaking, reading, using your voice, understanding language and stuttering. They also work with problems eating and drinking safely.

People with Ehlers-Danlos can require Speech pathology help due to the stretchiness in the ligaments of the jaw, throat, and neck causing weakness and fatigue from use. Dental problems can also be a problem for people with EDS, especially the Periodontal type. Dysphagia may also be a problem causing problems with safely swallowing food and water that a speech pathologist would be needed to address.

Speech pathologists can help with testing and give exercises to help strengthen and coordinate muscles. as well as educating the patient and family on safe foods to reduce choking episodes.

Speech Pathology as an allied health practice can be seen without a referral but can be referred by a GP under a Chronic Disease Management Plan, claimed through Private Health or may be part of an NDIS plan to help with costs.

Surgery is generally considered the last option and only when conservative management has been exhausted. For those with Ehlers-Danlos Syndrome (EDS) surgery may be required to stabilise joints by fusions and replace joints.

Surgery can be harder for some with EDS due to tissue fragility, vascular issues and joint instability in the upper spine during intubation etc. Healing may also take longer and scars may appear more prominent. Ensure your surgeon and doctors assisting in surgery are aware of your diagnosis so they can be more aware of your positioning and moving of joints during surgery. If you have comorbid conditions like MCAS, POTS, CCI etc it's very important to discuss these with your surgeon and anaesthetist as they can be very important with meds used, intubation requirements etc.