Spreading the word about polymyositis
Ron and Fay Spratt of St Huberts Island want to spread the word about a little-known condition suffered by less than 10 in a million people.
Ms Spratt was diagnosed with polymyositis 12 months ago but said she believed she may have had it for two years before that.
The first symptom was fatigue, she said.
"I was going back and forth to the doctor and one of the other symptoms was that I couldn't swallow properly so I had been put in hospital to have my throat stretched twice but it did not make any difference.
"Then I was told to go off my cholesterol tablets but that didn't help so finally I was sent to a neurologist who sent me for a muscle biopsy," she said.
Ms Spratt had to be put under a general anaesthetic so a sample the size of a sugar cube could be taken from her side and sent for testing within 12 hours of its removal.
"A muscle biopsy is the only way to get a positive diagnosis," she said.
Since diagnosis, Ms Spratt said the tiredness remains along with the difficulty to swallow.
"I need a glass of water next to me when I eat or the food doesn't go down properly," she said.
She also has difficulty standing up and experiences pain in her hips and profound weakness in her legs.
"I can't walk any distance on my own because I could fall over," she said.
She is currently having immunoglobulin infusions each month at Gosford Hospital, attempting to avoid taking Prednisone, the most common treatment for the condition, due to its side effects.
May is Myositis Month and Ms Spratt, as a sufferer, understands exactly what that means, along with fellow members of the support group she attends on a monthly basis.
Myositis Month is aimed at building awareness amongst the medical fraternity and health providers about one of Australia's rarest diseases.
Myositis Australian Association spokesperson, Ms Anita Chalmers said: "With increased awareness, we should get an earlier and more-accurate diagnosis and appropriate exercise advice.
"Current estimates place between five and 10 people per million Australians as afflicted across each of the three major forms of myositis: dermatomyositis, polymyositis and inclusion-body myositis.
"There is also a form which affects children as young as three called juvenile myositis.
"However, the true numbers are not known.
"Myositis is one of 80 auto-immune diseases affecting about 10 per cent of the Australia population.
Ms Chalmers said incorrect diagnosis also compounds the problem and hinders more precise analysis.
Since symptoms differ between individuals, myositis is hard to diagnose.
In many cases, myositis is associated with other autoimmune disorders of connective tissue such as scleroderma, systemic lupus erythematosus, rheumatoid arthritis, Raynaud's syndrome, and Sjogren's syndrome.
Typical early signs include: muscle weakness in thighs and shoulders; unexplained general tiredness and fatigue; difficulty standing up from a seat or floor; difficulty climbing stairs; falling down unexpectedly, weak grasping of objects and difficulty swallowing, or a reddish purple skin rash.
There may also be severe pain, swelling, rash/infection, temperature and blood pressure changes.
The underlying cause of all the inflammatory muscle diseases is unknown.
They are classified as auto-immune diseases because the primary activity is the body's immune system attacking its own tissue.
Media release, 1 May 2017
Anita Chalmers, Myositis Australia
Interview, 10 May 2017
Fay Spratt, St Huberts Island