A young woman diagnosed with a little-known condition that leaves her in such intense pain that she finds it difficult to scroll on her phone has urged others to watch for early symptoms before it causes irreversible damage.
Simone Black, 29, is one of an estimated 200,000 Australians living with psoriatic arthritis, an auto-immune disease that causes inflammation of the joints which can lead to heart damage, stomach problems and difficulty breathing.
Left untreated, the condition which results from the skin disease psoriasis can damage joints and bones so severely that it leaves sufferers unable to walk.
The public sector worker, who lives in Canberra, told Daily Mail Australia she used to teach gruelling body attack workout classes which burn an average of 555 calories in 55 minutes. Now, she said she cannot walk for more than 10 minutes at a time.
Simone Black (right) is one of an estimated 200,000 Australians living with psoriatic arthritis, an auto-immune disease that causes inflammation of the joints which can lead to heart damage, stomach problems and difficulty breathing
‘I used to be super physically active, in the gym, running and hiking all the time. Unfortunately, a lot of that is no longer possible,’ she told Daily Mail Australia.
Ms Black was only diagnosed in December 2020, five years after developing dull aches in her neck and the knuckles of her right hand.
The cause of her pain was missed by ‘four or five doctors’, but when the aches spread to her feet and left her struggling to walk during Australia’s first Covid lockdown in early 2020, she saw a rheumatologist who twigged it on the spot.
Ms Black had a brush with psoriasis – an auto-immune condition that causes the skin to break out in painful rashes and itchy, dry patches – at the age of 11, but the flare-ups vanished after about a year and gave her no trouble since.
‘The part of my immune system that used to attack my skin is now attacking my joints,’ she said.
‘GPs don’t have much knowledge of the condition, no one told us at the time [when she was a child] that we should look out for joint pain in the future.’
The public sector worker (pictured) told Daily Mail Australia she used to teach gruelling body attack workout classes which burn an average of 555 calories in 55 minutes; now, she said she cannot walk for more than 10 minutes at a time
In most people with psoriatic arthritis, psoriasis appears long before joint problems develop.
The skin condition typically begins during adolescence or early adulthood, while the knock-on arthritic effects usually occur between the ages of 30 and 50, though they can happen at any age.
In rare cases, psoriatic arthritis develops without the presence of any noticeable skin issues.
Unlike similar conditions such as rheumatoid arthritis, the condition cannot be identified by blood tests which often leads to delays in diagnosis and treatment.
Australia also has a shortage of specialists. In Canberra, Ms Black said there is a six-month wait to see a rheumatologist.
She wants others to be aware of the early warning signs of the condition, which include joint pain and stiffness, joint swelling, pitted nails that look bumpy or dented, lower back pain and eye problems such as worsening vision.
Ms Black (pictured) suffers from such intense pain that she finds it difficult to do simple tasks such as walking, chopping vegetables and scrolling on her phone
‘I didn’t know young people could get arthritis,’ Ms Black said.
‘But it’s important to know because the risk is permanent damage to your joints.’
Ms Black urges young people, particularly women, to ‘take pain seriously’ and insist on running through full medical history with doctors who may not be aware of such under publicised conditions.
‘If you feel like you’re not being listened to by your doctor or whoever, go elsewhere,’ she said.
‘I didn’t know years ago that you should tell your GP things like, “I have a sore neck”. I just thought being in pain everyday was normal.’
Arthritis has now spread to the joints and tendons of Ms Black’s hands and feet, as well as to her spine, affecting how she sleeps and limiting her ability to complete routine tasks such as cooking or even scrolling on her phone.
‘I love to cook but I can’t really manage it anymore, I can’t chop vegetables because it’s too painful,’ she said.
‘My partner has to do lots of things for me. It’s really frustrating because I just want to be able to do normal things.’
The only thing that alleviates her pain after exercise or movement is sitting with ice packs on her hands and feet.
‘I do feel held back from life at the moment. I’m hopeful things will improve with the right treatment, but the ones I’ve tried so far haven’t worked,’ she said of the anti-inflammatory drugs typically given to patients.
Australians living with psoriatic arthritis can now become active and informed participants in their journey with the disease through MyPsA, an online hub launched in August by Arthritis Australia.
Arthritis Australia CEO Jonathan Smithers said the tool is ‘vital’ to educate patients on how to better manage the little-discussed condition.
Ms Black (pictured) urges young people to ‘take pain seriously’ and insist on running through full medical history with doctors who may not be aware of such under publicised conditions
‘Australians living with psoriatic arthritis have not been able to access simple, centralised, and relevant information about this condition before today,’ he said.
‘Along with consulting regularly with their rheumatologist, people with psoriatic arthritis should also have easy access to reputable sources of information so they can learn more about their condition, and MyPsA can offer them just that.’
The hub provides information about the disease as well as a range of links for treatment options and tips about lifestyle changes that can improve quality of life.
‘We want every Australian living with psoriatic arthritis to have access to up-to-date news, information, and treatment options regardless of where they are on their journey or where they live around the country,’ Mr Smithers said.
For more information about psoriatic arthritis and to visit the online hub, please click here.