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“Oh Mummy, you look as though you’ve been ironed…!”

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Abbey was born a new parents dream; she ticked all the boxes, was meeting her milestones, was happy, crawled and was walking by 12 months. By 20 months however, her early waking excitement seemed subdued and she would resort to a slow crawl until midday.

Mother Amanda and father Graham, both paediatric nurses, exchanged worried glances and pondered the possibility of illness, decided to see their doctor, who turned out to be away.

In his place, a locum deputised, a doctor who had recently finished a rheumatology rotation at Princess Margaret Hospital for Children in Perth and was full bottle on RA, arthritis, JIA. Such is the lotteries of life.

He examined Abbey’s swollen knees, took a history from the parents and suspected juvenile idiopathic arthritis (JIA). He said ‘…take Abbey immediately to the nearest hospital emergency department.’

Her parents, alarmed by his urgency, contacted a work colleague to discuss the best option for having Abbey reviewed through correct channels. She suggested ‘…if the diagnosis of JIA was correct – go and see the Paediatric Rheumatologist in his rooms as soon as possible’.

They did, and Abbey underwent a barrage of investigations including testing her eyes for any sign of uveitis, a condition dangerous to sight.

With their paediatric knowledge, Amanda and Graham feared the worst; the test results confirmed their fears. Abbey did indeed have juvenile idiopathic arthritis, her joints were inflamed, her eyes were at risk and loss of sight was a high possibility.

Little Abbey had no idea what a life sentence her newfound diagnosis had dealt her. Now 14, she injects Humira every two weeks, is on a multitude of oral medications to manage her pain, administers steroidal eye drops multiple times every day, yet still holds her smile today.

Despite being compliant with management regimes, her left eyesight has deteriorated, a cataract formed and with rising pressures in her eyes glaucoma was diagnosed. At 4 years of age awakening from her cataract operation with a new lens insitu, she exclaimed …“Oh Mummy, you look as though you’ve been ironed…!”

Heartbreakingly Abbey had not been seeing the world well for some time. Her joints are also affected, cartilage is fragile and bits have broken off requiring surgical removal. Her knees and ankles are swollen, hot and painful. Wrists and fingers ache when she writes. Hospital visits have been plentiful and active sport is off her agenda. Being born with pain, she knows not what life without pain is like…

If occasionally, you wonder why our passion for solving these problems, runs so high, surely Abbey’s story is but one. This is a lovely girl of 14 years, who lives with juvenile idiopathic arthritis, her eyesight is at constant risk and she survives each day by ingesting an amazing array of drugs in attempt maintain her joint health, mobility and vision.

Our ambition is to find a cure, and we will if we can anticipate your help too.

Psoriatic Arthritis and Exercise

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Psoriatic Arthritis can cause swelling, pain and stiffness in and around the joints. A regular exercise program is recommended to strengthen and stretch the muscles, and to keep your body moving through its full range of motion each day, as well as regular aerobic exercise.

“Regular physical activity benefits everyone, whether or not you have psoriatic arthritis. It helps to reduce your pain, strengthen your muscles, maintain joint function and improve your sleep and overall health.” (Arthritis Australia).

Exercises to strengthen and stretch your muscles will help to improve your posture and maintain flexibility, and are best done each day, or at least 5 times a week. Moderate aerobic exercise for 30 minutes each day is also recommended for you general fitness, this can be broken up throughout the day, for example, 10 minutes in the morning, 10 minutes at lunch time, and 10 minutes in the afternoon.

A physiotherapist will be able to provide you with strength and flexibility exercises which you can perform at home or in a gym, as well as a program for aerobic fitness which may include activities such as walking, swimming, low impact aerobics, or cycling.

The symptoms of psoriatic arthritis will vary for each person, so the level and type of exercise that is recommended will vary too. Some will be aiming to improve their fitness, while others will be focusing on staying mobile. A physiotherapist will be able to design an individualised exercise program for you.

“If you experience early morning stiffness, gentle stretching exercises under a warm shower will help.” (Arthritis Australia)

PAPPA (“A Positive Approach to Psoriasis and Psoriatic Arthritis”) emphasises the importance of doing some exercise each day, and recommends modifying your exercise program on days when joints are swollen and painful, for example swimming rather than walking if knees and ankles are affected.

PAPPA suggests using the following strategies to keep motivated:
• “Be realistic – set yourself achievable goals
• Keep a diary or schedule – record what exercises you have done and plan how you are going to progress them
• Join a class or exercise with someone else – recruit family or friends to help you stay on track
• Reward yourself from time to time – treat yourself if you reach a goal or complete a week without missing a day
• Make exercise fun where you can – try exercising to music or outside
• Try to work exercise into your daily routine – e.g. walk the kids to school; even doing the dusting can exercise the shoulders.” (PAPPA, “Physiotherapy & Exercise: Psoriatic Arthritis”)

Arthritis & Osteoporosis WA have physiotherapist led Arthritis Exercise classes which are suitable for most people with Psoriatic Arthritis. Please see the Exercise Calendar for details, and remember to always consult your doctor or physiotherapist before commencing a new exercise program.

Ehlers Danlos Syndrome: Diagnosis makes a difference

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Some of us are naturally more flexible than others, or hypermobile as the medical people describe it. For many, being hypermobile is not a big deal and may even offer advantages in certain sports and careers. For others, these stretchy tissues can cause serious ongoing health challenges which are painful, unpredictable and sometimes disabling.

My younger daughter Cate hurts her joints very easily doing things other 6-year-olds take for granted. She’s dislocated her shoulder three times at rest. Her jaw is so loose that she struggles to speak clearly, and has been in speech therapy for years. Chewing a steak is out of the question!

My older daughter Lucy is fourteen and has spent the past year dealing with severe nerve pain triggered by a dislocation which tore her hip. She was sitting at the dinner table when it happened.

Lucy was bedridden for more than four traumatic months before learning how to function with persistent and often intense pain. She missed nearly two-thirds of school last year.

I’ve always been bendy myself and had my fair share of painful joints and other problems. However, towards the end of my last pregnancy, I suddenly couldn’t weight bear because my hips were dislocating with every step. I’ve had several surgeries, but the repairs didn’t last. The pain and restrictions persist nearly seven years later, and now many other joints have joined the party.

Despite years of unexplained symptoms and endless medical appointments, it wasn’t until Cate was nearly five that we were all diagnosed with the hypermobile type of Ehlers Danlos Syndrome (EDS).

EDS is the name given to a group of genetic or inherited disorders which affect collagen, a vital building block in the connective tissue or “glue” which holds our bodies together. Although EDS is increasingly recognized as causing musculoskeletal pain, collagen is the most abundant protein in the body, meaning there is almost no limit to the places where issues can arise.

Poor eyesight, dental crowding, soft and fragile skin, excessive bleeding, digestive system issues, and autonomic dysfunction are just some of the problems my daughters and I deal with every day.

Cate’s skin splits open easily, so a simple scratch will heal slowly and often leave a scar. In hot weather, if I stand up quickly I lose my vision, get very dizzy, and sometimes faint. To combat this, I am supposed to drink lots of water but I also have gastroparesis (stomach paralysis) and often can’t drink anything at all.

Many health professionals appear reluctant to formally diagnose EDS, perhaps because it is considered rare and has no cure. Since hypermobility occurs on a spectrum, it can also be difficult to distinguish a flexible but otherwise healthy person from someone with EDS or a related disorder.

For my family though, our EDS diagnosis was the first positive step towards us taking back some control over our lives. Not only do we finally have an answer for all the things that were going wrong, but we are also able to meet others in the community with the same condition, and to seek treatments which have the best chance of improving our quality of life.

We see occupational therapists, pain specialists, and have a phenomenal physiotherapy team to help us build strength using techniques appropriate for our hypermobile joints. Now we know about EDS we avoid certain activities, and my daughters are very fortunate to have a wonderful paediatric rheumatologist to coordinate their care. Because of our diagnosis, we’ve been able to access some sources of assistance to help a little with the significant financial strain on our family.

Although it’s considered rare, some experts believe EDS and related hypermobility disorders may be underdiagnosed. Symptoms can vary dramatically, even within the same family.

“Carrie’s story is all too familiar to me as a specialist clinician in this area of Medicine, but I suspect on reflection, colleagues will realize they too have patients with similar histories in whom the diagnosis has not been considered.” said Dr Alan Hakim, Consultant Rheumatologist and Clinical Lead of the Hypermobility Unit at London’s St John and St Elizabeth Hospital.

“The value to individuals and families of a diagnosis, and our then ability to adapt and better treat them should not be underestimated. The challenge internationally is to both help non-specialists recognize these conditions, and to develop more multi-disciplinary teams with resources to support people like Carrie and her family.”

For more information about hypermobility disorders and Ehlers Danlos Syndrome, visit the websites Hypermobility.org or www.ehlers-danlos.com

Guidance for the use of medicinal cannabis

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There has been much interest in the use of medicinal marijuana since the Australian government passed laws allowing the cultivation and manufacture of cannabis for medicinal purposes.

Currently, there is limited evidence about the effectiveness of cannabis and its derivatives for use in different medical conditions. There is also little known as to the most suitable and safe doses of individual products.

This is why, with the exception of one extract (nabiximols), medicinal cannabis products do not appear on the Australian Register of Therapeutic Goods (ARTG) and, as in most other countries, are not available as registered prescription medicines.

For a product to be registered on the ARTG, a sponsor (usually a company) would need to submit a dossier of scientific evidence to the Therapeutic Goods Administration documenting the clinical efficacy, safety and manufacturing quality of that product.

Currently, the Australian Government does not subsidise the cost of medicinal cannabis products through the Pharmaceutical Benefits Scheme (PBS).

Access to medicinal cannabis
Medicinal cannabis can only be prescribed by a registered medical practitioner.

Before prescribing it, the doctor will assess each patient to decide if the treatment is appropriate for their condition and their individual circumstances. The doctor will take a full medical history and a family health history. The doctor will also consider the patient’s current medications and identify any current or previous problems with drug dependence and substance abuse.

Doctors must apply and obtain approval under the applicable state or territory laws to prescribe a medicinal cannabis product to a patient, where relevant. Rules relating to these products vary between states and territories and could affect whether or not you can be prescribed particular medicines in your state or territory.

A variety of products are currently available through import from Canada or Europe. These include raw (botanical) cannabis, which for medicinal purposes should be vaporised but not smoked, cannabis extracts in oils, and solvent extracts such as tinctures, and oro-mucosal sprays. Some products for trans-dermal application (patches or topical application of gel or cream) have also been developed.

Similar products for medicinal use, manufactured from locally grown cannabis, are expected to become available during 2018.

The evidence
Doctors rely on scientific evidence to make informed decisions about the best medications for their patients. For medicinal cannabis, the amount of evidence is currently limited and the products, doses and research methods used vary between studies. This makes it difficult to come to any firm conclusions about how best to use particular products.

There is also not much information available to help doctors determine the most appropriate and safe doses while minimising potential side effects.

As there is limited scientific evidence to support the use of medicinal cannabis in most conditions, and in many cases the available evidence is for its use together with other medicines, it should be used only when approved treatments have been tried and have failed to manage conditions and symptoms.

Side effects of medicinal cannabis
Like all prescription medicines, medicinal cannabis products can have side effects. The extent of effects of these can vary with the type of product and between individuals.

Tetrahydrocannabinol (THC) and cannabidiol (CBD) are two types of cannabinoids found naturally in the resin of the marijuana plant, Cannabis sativa.

The known side effects from medicinal cannabis treatment (both CBD and THC) include fatigue and sedation, vertigo, nausea and vomiting, fever, decreased or increased appetite, dry mouth, and diarrhoea.

THC (and products high in THC) has been associated with convulsions, feeling “high” or feeling dissatisfied, depression, confusion, hallucinations, paranoid delusions, psychosis, and cognitive distortion (having thoughts that are not true).

General cautions
• Patients should not drive or operate machinery while being treated with medicinal cannabis. In addition measurable concentrations of THC (the main psychoactive substance in cannabis) can be detected in urine many days after the last dose. It may take up to five days for 80 to 90 per cent of the dose to be excreted. Drug-driving is a criminal offence, and patients should discuss the implications for safe and legal driving with their doctor.
• Medicinal cannabis is not appropriate for people with an active or previous psychotic or active mood or anxiety disorder; women who are pregnant, planning to become pregnant or breastfeeding; and people with unstable cardiovascular disease.
• Patients with neurological conditions may be more likely to experience negative effects from medicinal cannabis.

More research is needed
There is a significant need for larger, high-quality studies to better explore the potential benefits, limitations and safety issues associated with medicinal cannabis treatment across a range of health conditions and symptoms.

As this new evidence emerges over time from doctors, clinical trials and other research, the Australian Government will progressively update the guidelines for both doctors and patients.

For more information visit the Department of Health Therapeutic Goods Administration website at www.tga.gov.au

Reference:
Therapeutic Goods Administration (TGA). (2018). Guidance for the use of medicinal cannabis in Australia: Patient information. Available at: https://www.tga.gov.au/publication/guidance-use-medicinal-cannabis-australia-patient-information

Is good work good for us?

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It has been shown through multiple research reports and publications that good work is good for our mental and physical health and wellbeing. The quality of the job is important, so work is generally good for you provided you have a good job.

There is extensive evidence that there are strong links between unemployment and poorer physical and mental health and mortality (early death). Research shows that the longer someone is off work, the less likely they are to return to work.

GPs play a critical role in recovery and return to work. Having time off work, especially for a long term, significantly increases the rates of work disability and poor physical and mental health. Individuals don’t have to be 100% well to be at work.

Work can often be modified or redesigned to accommodate for the physical and mental changes and limitations for those who have an injury, illness or disability. Research has shown that good work can help in recovery from injury and illness.

Employees are two times more likely to return to work if they are given advice on how to stop the injury from happening again. Employees are three times more likely to return to work if they are given a return to work date.

Occupational Medical specialists in Australia recommend:
• Where practicable, people should be encouraged and accommodated to remain connected to the workplace while recovering from illness or injury, as this assist with shorter recovery times and prevents unnecessary disability.
• The spirit of inclusive employment practices should be embraced as it helps to reduce the risk of unemployment, social and economic inequality and associated poor health outcomes. The involvement in good work can promote social cohesion and increase peoples’ sense of contribution to society
• If injured or ill, best practice rehabilitation and injury management for workers should be promoted and where appropriate, people with chronic illness and disabilities should be accommodated in the workplace with a supportive work culture.
• A supportive working environment and good interpersonal relationships should be fostered at work to promote the mental and physical health and well-being of people. Good work promotes good health and increases productivity. Safe and healthy work practices have socioeconomic benefits for both business and the wider community.

To find out more about Occupational Medicine in Australia and good work being good for you visit:
Royal Australasian College of Physicians and the Australasian Faculty of Occupational and Environmental Medicine- Health Benefits of Good Work
• www.racp.edu.au/advocacy/division-faculty-and-chapter-priorities/faculty-of-occupational-environmental-medicine/health-benefits-of-good-work

To find out more about how the Australian Government can support people with injury, illness and disability return or stay at work visit: Job Access information at www.jobaccess.gov.au/people-with-disability/australian-government-support-work

Ergonomics and the benefits of good work for individuals with Musculoskeletal disorders

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We know that the human body needs physical activity, mental stimulation and social interaction to stay healthy and to thrive, and that engaging in good work is good for us. For individuals who have a musculoskeletal disorder, whether acute or chronic, remaining engaged in good work for as long as possible is important for their health and well-being.

What is Ergonomics?
The word ‘ergonomics’ is Greek in origin and means natural laws (nomo) of work (ergo). The principles of ergonomics aim to create a balance between the demands of work and the capacity of the worker through the design of good work and jobs, work systems, environments, equipment and loads.

Our physical and psychological capacity for various types of job demands is dynamic and changes from time to time. When the demands of a task or job, whether physical or mental, are greater than the capability of the individual doing the work, stress (physical or psychological), and consequently strain and injury, may result. For individuals who have limited physical and psychological capabilities, or for jobs and tasks that are highly demanding, the application of ergonomics is especially important.

The primary aim of applying ergonomic principles is to improve the function, health and performance of people through the design and modification of various aspects of work such as:
a) job and task design (eg. how often or how long a task is performed),
b) work systems (eg. staffing and communication methods)
c) environment (eg. how much space is made available to do the job),
d) equipment (eg. a trolley),
e) loads that need to be handled (eg. handle, size and weight of packages)

At the organisational and individual levels (particularly those with a musculoskeletal disorder), ergonomic principles may be applied at all three levels of prevention:
• primary (before an injury presents),
• secondary (soon after signs and symptoms present) and
• tertiary (when the condition has led to some physical impairment).

Ergonomics is a key approach to designing good work so that people can perform well and enjoy their jobs without feeling strained.

What are manual tasks and how are they related to musculoskeletal disorders?
Manual tasks refer to any activity or sequence of activities that requires a person to use their physical body (musculoskeletal system) to perform work. Manual tasks can place strain on the body if:
• the forces required to perform the tasks are excessive (the use of high force when lifting, lowering, pushing, pulling, carrying or otherwise moving, holding or restraining any person, animal or thing);
• actions required are highly repetitive and prolonged without adequate breaks;
• postures required to be adopted are awkward or sustained; and
• using tools or equipment exposes workers to hand arm or whole body vibration.

The main health problems that can arise as a result of performing manual tasks that are poorly designed and the worker has no control over, are musculoskeletal disorders. There are many duty holders that have responsibilities under various aspects of the Occupational Safety and Health Act (OSH Act) and the Occupational Safety and Health Regulations (OSH Regs).The important systems which all organisations should have in place include those to prevent and respond to incidents related to performing hazardous manual tasks.

What should one do if they suspect that work is aggravating their musculoskeletal condition?
If you feel that the tasks you are performing at work is placing a physical strain on your body and leading to discomfort or pain, let your workplace supervisor know. The aim of this is so that your supervisor can investigate the situation. They may conduct a direct investigation or a risk assessment of the manual tasks you perform so that they can have a better understanding of which factors may be leading to or aggravating your condition and what solutions may be put in place to prevent this.

An injury at work can have significant consequences for your personal and professional life. Early medical intervention and treatment (such as consulting your GP and receiving treatment and advice from a physiotherapist), and early return to good work is very important should you experience work related musculoskeletal disorders. Workers’ compensation laws in WA aim to minimise the impact of a workplace injury by ensuring injured workers are fairly compensated while they are unable to work, and assisted in their return to work following an injury.

For more challenging situations, your workplace may want to consult a specialised ergonomist, or another health professional, such as a physiotherapist or occupational therapist who understands ergonomic principles.

To find out more about ergonomics, physiotherapy and occupational therapy visit the website:

• www.ergonomics.org.au
• www.physiotherapy.asn.au/APAWCM/Controls/FindaPhysio.aspx
• www.otaus.com.au/find-an-occupational-therapist

To find out more about reducing the risks of injury from performing manual tasks visit: WorkSafe – Safety Topics: Manual Tasks at www.commerce.wa.gov.au/worksafe/introduction-manual-tasks

To find out more about injury management and workers compensation visit: WorkCover- Workers’ Compensation & Injury Management: A Guide for Workers
•www.workcover.wa.gov.au/content/uploads/2014/09/Workers-Guide-May-2016-Web-version.pdf

by Jean Mangharam, BSc (Physio) (Hons) MSc (Ind Hyg/Ergo) Principal Scientific Officer, Human Factors and Ergonomics, Work Safe WA