PILBARA AUTHOR NATASHA BALL TURNS RARE DISEASE BATTLE INTO A BOOK OF HOPE
Book Cover of Dancing in a Myositis Storm, by Natasha Ball, published September 2026. ISBN: 9798172199134.
By: Lynnese O’Donoghue
A Pilbara Aboriginal woman who went from living an active life to struggling with everyday tasks has turned her battle with a rare autoimmune disease into a powerful story of determination, cultural identity and hope.
Natasha Ball was diagnosed in 2023 with immune-mediated necrotising myopathy (IMNM), a rare autoimmune disease that attacks healthy muscle tissue, causing severe weakness and potentially life-threatening complications.
Before her diagnosis, Natasha was working full-time, raising her family and helping her husband with their horses.
But gradually, everyday activities became increasingly difficult.
Speaking with Ngaarda Radio's Lynnese O'Donoghue, Natasha recalled the moment she realised something was seriously wrong.
"I was on the floor spending time with my grandson and playing with his little toy cars ... and I couldn't get up. I was struggling to get up off the floor."
What followed was a frustrating journey through the healthcare system, with Natasha visiting four doctors before finally receiving the medical attention she needed.
She said her symptoms were difficult to diagnose because they resembled those of other conditions.
After seeking help from the Aboriginal Medical Service in Roebourne, Marwarnkarra Health Services, Natasha was referred for urgent medical treatment.
Within two days, she was flown to Perth.
"I'm very grateful to the medical team at Roebourne AMS because they literally saved my life," she said.
LEARNING TO LIVE WITH A RARE DISEASE
Natasha's diagnosis has changed almost every aspect of her life.
The condition causes her immune system to attack healthy muscle tissue, leaving her with fluctuating levels of weakness and fatigue.
"Some days I can get up and walk through the shops no worries and then other days I need a wheelchair," she said.
Natasha Ball does alot of Advocacy work and has her own Facebook page, Dancing in a Myositis Storm
"It just depends on how the symptoms turn up that day and then I just decide how to best manage it."
Natasha now undergoes immunoglobulin infusions every two weeks at Karratha Hospital and takes immunosuppressant medication to help manage her condition.
While the treatment helps her maintain strength, it also leaves her vulnerable to infections.
Despite the challenges, Natasha remains determined to live a meaningful and fulfilling life.
"I've found other ways to enjoy life ... I love my life even though it looks different."
Natasha still all smiles and positive during a hospital visit for treatment
TURNING PAIN INTO PURPOSE
What began as a personal way of coping with her diagnosis has now become Natasha's first published book, Dancing in a Myositis Storm.
Initially, she began writing in notebooks to process her emotions, document medical appointments and record how she was feeling.
Before long, she had filled three notebooks.
"I just remember thinking, 'Oh, wow, I've got a lot to say,'" she recalled.
The writing eventually developed into a memoir exploring the physical and emotional challenges of living with a rare disease.
Natasha said deciding to share such a deeply personal story was not easy.
"It was scary thinking, 'Oh my gosh, I'm going to put this out there.' But you know, I'm really glad that I did because illness is a tough subject ... to talk about."
For Natasha, the book is about much more than her own experience.
"So this is my way of saying, you know, if you're sick, if you're facing a diagnostic process or if you are in a situation like mine, you're not alone and it's okay to talk about it and it's okay to ask for help."
Natasha with her Husband Mickie Ball, visits to hospital don’t have to be isolating, she said that when you are diagnosed with a rare condition you need your support and your family and this is defeninetly evident here. Photo Credit: Natasha Ball
After approximately 18 months of writing, Natasha said finally holding the finished book was an emotional milestone.
"I feel really proud ... and I feel really relieved because there were many times in this writing journey that I wanted to pull out and go, 'No, I can't do this.'"
CALLING FOR CULTURALLY SAFE HEALTHCARE
Natasha's experience has also strengthened her commitment to improving healthcare for Aboriginal and Torres Strait Islander people.
She is involved in national healthcare advisory work and rare disease advocacy, including supporting people navigating complex diagnoses and treatment.
Natasha believes the healthcare system needs to better understand the importance of culture, family and traditional knowledge when treating First Nations patients.
"We are a communal people so going into a healthcare system we don't go in, in isolation. We go in with our community, our culture and our ... knowledge from all of those things."
She said patients living with rare diseases already face significant challenges because their conditions are often poorly understood.
For Aboriginal patients, those difficulties can be compounded when cultural practices and family involvement are not adequately supported.
"You want your mob around you. And you want your bush medicines, and you want your old people to come and sit with you."
Natasha said there were times when she felt her cultural identity was not fully recognised within clinical settings.
"There were days when I thought I almost have to leave my culture at the door before I walk into the clinical setting and that scares me because that's ... the biggest barrier I think for our mob."
Natasha receiving her treatment that helps her in with living with Myositis and the ongoing dance to how those symptoms show up each day. Photo Credit: Natasha Ball
She hopes sharing her experience will help encourage healthcare professionals to provide more culturally responsive care.
USING HER VOICE TO HELP OTHERS
Natasha is also an ambassador for Rare Voices Australia and volunteers with organisations supporting people affected by rare diseases.
She runs online support groups and hopes her book will help others feel less isolated.
"Illness and rare disease can be very isolating," she said.
Natasha bravely receiving treatment, speaking out on this rare disease sharing her life in the hope her words can help people who may be going through similar health diagnosis, health professionals or influence more cultural understanging in health spaces. Photo Credit: Natasha Ball
"It ... can become disconnected from your community and ... from the world that you knew before you got diagnosed."
Her advocacy extends beyond patients to their families, carers and healthcare professionals.
Natasha hopes her book will encourage more conversations about illness and help people understand the importance of listening to those seeking medical care.
"I might be the one voice that helps somebody else to do something good for their health."
Where it all started, the 3 Journals that Natasha penned and wrote to process her emotions, document medical appointments and record how she was feeling. Now turned into her book, Dancing in a Myositis Storm. Photo Credit: Natasha Ball
A MESSAGE TO OTHERS: DON'T IGNORE YOUR HEALTH
Despite everything she has experienced, Natasha remains hopeful about the future.
Her book has already opened opportunities to speak at conferences and events, and she has hinted at further announcements in 2027.
But her most important message is for anyone who may be experiencing unexplained symptoms or struggling with a life-changing diagnosis.
"You're never alone ... and don't ignore the little things. Don't ignore those little niggling symptoms that you think are nothing."
Natasha hopes her journey will encourage people to seek help, ask questions and advocate for their own health.
"Take your health seriously and care about it because we only get one shot at this life."
Natasha and Mickie Ball with their son, Troy feeding and hanging out with the horses, a time the family enjoy together. Photo Credit: Natasha Ball
Dancing in a Myositis Storm by Natasha Ball was published in September 2026 and is available in paperback and electronic formats.
Listen to Natasha Ball's full interview with Lynnese O'Donoghue on Ngaarda Radio to hear more about her journey, her book and her advocacy for culturally safe healthcare.