Hi, I’m Khal. I live with a rare autoinflammatory disease called Familial Mediterranean Fever (FMF). I’m sharing my journey to help raise awareness, support others, and advocate for better research and care.
I was diagnosed with FMF 13 years ago within three months of being seen by a cardiologist. This diagnosis was based on clinical presentation, genetics, and a positive response to a medication I was taking. For others, this journey can take years.
I believe my symptoms began at around age 11 with unexplained fevers. These symptoms worsened in my 30s after moving to Australia. I have experienced pericarditis, pleurisy, orchitis, joint pain, sacroiliitis, ankylosing spondylitis, serositis, fevers and inflammation of the mesenteric artery. There are probably more symptoms that I’ve forgotten.
I’ve lost count of the number of times I’ve shown up at the emergency department after exhausting all my pain management strategies. At last count, I’ve had pericarditis nearly 40 times. Despite the clear signs, it took the insight of a Turkish paediatric physician, who I found through an article, to finally point those questioning my diagnosis in the right direction.
With the support of my general practitioner (GP), cardiologist, immunologist, and an infectious diseases expert, they finally all agreed to my diagnosis of FMF in 2012.
In 2013, alongside fellow director Sharon, I co-founded Australia’s and New Zealand’s first dedicated support group for patients and carers affected by FMF. This initiative exemplifies my unwavering commitment to fostering community, understanding, and hope for individuals and families impacted by rare autoinflammatory conditions.
Since then, my journey hasn’t been easy. I’ve also been diagnosed with trigeminal neuralgia (TN), a debilitating facial pain disorder. I’ve undergone two brain surgeries (microvascular decompression) and faced complications like occipital neuralgia and cluster headaches.
In 2022, I started a tumour necrosis factor (TNF) blocker biologic which, after a difficult adjustment period, has been life changing. It has significantly reduced my FMF and fibromyalgia flares, improving my quality of life.
Over the past 13+ years, I’ve dedicated myself to creating awareness and reducing the isolation that comes with living with rare diseases. This is why I co-founded Rare Voices Australia Partner, the Australian and New Zealand Forum for Autoinflammatory Diseases (ANZFAID), a not-for-profit organisation connecting patients, clinicians, and researchers to improve outcomes for people impacted by autoinflammatory diseases.
This story was originally shared in September 2025 to mark World Autoinflammatory Awareness Month.
