Sharing your personal story has benefits to the person telling the story and to those who share a similar experience. If you are willing to share your personal story of living with rare disease please tell us here.
Story of the Month
Nothing Found
Vanessa’s Story
- Congenital Panhypopituitarism
I was born in Wollongong, New South Wales in 1971. I was induced as I was two weeks overdue and severely jaundiced at birth.
Joan’s Story
- Poland Syndrome
I am a 75-year-old woman born with Poland Syndrome. I was born in 1946 in Sydney. My mother was 38 and thought my birth defects were caused by a fall she had when she was expecting me.
Matthew’s Story
- Peutz-Jeghers Syndrome
I was diagnosed at the age of three after a trip to the local general practitioner where the dark spots on my lips were noticed.
Jacob’s Story
- SCN2A
It was July 2020 and our son, Jacob, was 21 months old when his epilepsy journey began.
Claudia’s Story
- Scleroderma
In 2013, I was diagnosed with an autoimmune disease called scleroderma that, on average, affects 6,000 Australians.
Adrian’s Story
- Poland Syndrome
In 2021, I turned 50-years-old and decided it was time something was done about Poland Syndrome.
Emma’s Story
- Ohdo Syndrome
Emma’s story began seven and a half years ago… Emma is one of eight children in Australia with a rare condition called Ohdo syndrome.
Abbey’s Story
- Chronic Idiopathic Neutropenia
Severe chronic idiopathic neutropenia impacts my life in a lot of ways.
Danielle’s Story
- Thrombocytopenic purpura (ITP)
"If there was one thing that I would have loved to hear when I started on my immune thrombocytopenic purpura (ITP) journey, and then have repeated back to me at certain points, it would be, 'It will be okay. You will be okay.'" - Danielle
Janna’s Story
- Ehlers-Danlos Syndrome
I have a clinical diagnosis of hypermobile Ehlers-Danlos Syndrome (hEDS). Historically, this has been reported to have an incidence of somewhere between 1 in 2,500 and 1 in 5,000 people.
Kathryn’s Story
- Anti-neutrophil Cytoplasmic Antibody (ANCA) Associated Vasculitis
It was early 2018 when I was diagnosed with anti-neutrophil cytoplasmic antibody (ANCA) associated vasculitis.
Catherine’s Story
- Primary Ciliary Dyskinesia
My name is Catherine and I was formally diagnosed with Primary Ciliary Dyskinesia (PCD) in 1980 at the age of 11.
Jemima’s Story
- Tuberous Sclerosis Complex (TSC)
I always knew that my little brother Caleb was special. He’d had two heart surgeries by the age of 7.
Kate’s Story
- Fibromuscular Dysplasia (FMD)
It was a strange sensation; a distinct but not painful feeling in my left eye which lasted for a few minutes.
Naomi’s Story
- X-linked hypophosphatemia
At nearly 30, after a neurologist noticed my gait and coordination issues, I was diagnosed with X-linked Adrenoleukodystrophy (ALD).
Gabriela’s Story
- SCN2A
We welcomed to the world our little warrior, Gabriela, in June 2016. When I first held her in my arms, all I wanted to do was protect her.
