In 2010, I was diagnosed with a rare life-threatening auto-immune disease called Neuro-Cardio Behçets. Less than 1% of the Australian population are diagnosed with Behçets disease - of these, 95% will be diagnosed with non-life-threatening symptoms, while 5% will have life threatening involvement of vital organs. In my case, I developed both cardiac and neurological involvement. I had hit the jackpot!

Leading up to my diagnosis, I was healthy and active with a demanding yet fulfilling full-time career and home life. I loved my work as a cardiac diagnostic imaging specialist and found it immensely rewarding and could not imagine life without it. Although it was a constant juggle with my role as mum, as I often worked 9 to 10 hours straight before heading home, to swap roles and put my mum hat back on. To be honest, I am not sure how I maintained this crazy pace and hectic lifestyle for two decades without the wheels falling off much earlier. 

I realise now that I just didn’t have the time to notice when my body started whispering to me that something wasn’t quite right. My symptoms started vaguely at first, the first being multiple enormous ulcers in my mouth that would no sooner heal, and I would have another mouth full. I began to be aware of how tired I was all the time, beyond tired, it was complete exhaustion. I blamed this on the fact that I was getting old (I was only 40!). I started taking Vitamin B and going to bed a few hours earlier, but nothing would abate my complete and utter fatigue. I was chronically exhausted no matter how much sleep I got, or how many things I started to delete from my to do list. My knees started throbbing at night and when I tried to get out of the car after driving to work, I struggled to straighten them after having them bent for so long. Soon my ankles, wrists and elbows joined in, and my morning run was now totally out of the question. While I had always been prone to headaches, I now had a constant headache along with what felt like a brain full of cotton wool. Trying to think through the brain fog was not dissimilar to trying to drive through a thick foggy morning, and any high-level cognitive function became almost impossible. My memory, which had always been very good started to fail me. I struggled to remember names of friends that I had known for years, forgot what I was saying in the middle of a sentence and began to forget things that were part of my normal day to day routine.

Over the next four months the gentle whisper became a scream. I went from living a full life, to a life in which my immune system switched from friend to enemy, going on a rampage and attacking healthy cells in my body, my joints, my brain and my heart.

By February 14th, 2010, I developed severe crushing chest pain and was admitted to hospital with inflammation of my heart – Happy Valentine’s Day! I lost 5kg in ten days and could barely walk. It took six months of testing and consults with specialists from infectious disease, immunology, cardiology and neurology, before a diagnosis was made. All the time my health continued to deteriorate. As with the standard treatment protocol for autoimmune diseases presenting in this way, I was prescribed high dose prednisolone in combination with many other immunosuppressive medications. Ultimately, I would start and fail every treatment option available. With each relapse I seemed to deteriorate further, until I was living a life confined to bed, too sick to care for myself, with chronic relapsing pericarditis, myocarditis, and aseptic meningitis. I was in constant pain, exhausted and existing from breath to breath.

Over the next decade I have presented to emergency departments countless times with cardiac and neurological complications, and numerous long hospital admissions in intensive care and coronary care, for pericarditis (over 20 times) eventually progressing to constrictive pericarditis along with tamponade and a cardiac infarct. As well as multiple episodes of meningitis and meningoencephalitis and a stroke, which affected my ability to talk and move my left side.

I would like to take this opportunity to thank all the immensely skilled and talented medical professionals, who over the last decade have cared for me and who have been responsible for giving me the best that conventional medicine has to offer. Without the enormous collective effort of so many, I am quite sure that I would not be here telling my story today.

However, while conventional medicine has played an important and vital role in my survival in emergency situations, along with the crucial role that access to first class medical treatment has played in enabling me to remain relatively stable in-between these relapses. I never managed to maintain wellbeing for any length of time. Despite almost a year of weekly high dose chemotherapy, along with biologic agents and experimental immunotherapies, these treatments did little more than rescue me for a limited period of time, with any remission obtained failing to last once the treatment was ceased. My autoimmune disease kept being ‘switched’ back on, and I would ultimately find myself rapidly deteriorating and a medical emergency once again.

It became very evident to me that even though I had achieved remissions with experimental treatments and immunotherapy, something kept “switching on” my autoimmune disease.

And so, I began my quest to find out what I may have overlooked - what the missing link was between living a life of chronic illness and pain to being able to live a life of health and renewed wellbeing.

What I discovered was compelling, a little confronting, and very disturbing.  

The evidence that has emerged in the last few decades - that our modern-day world seems to be playing havoc with our health - a story that seems to have become another inconvenient truth. The rate at which autoimmune diseases have increased worldwide since the 1950’s is at such an alarming scale, that we are now faced with a global epidemic of autoimmunity. The Mayo Clinic for instance has reported that the incidence of Lupus has nearly tripled in the US, while Type 1 diabetes has increased fivefold in the past forty years.

It is hard to ignore some crucial factors at play here – a rapidly changing environment along with dramatically changing lifestyle choices (diet, stress etc.) from those that we as a human species were exposed to over 100 years ago - all in a time period that is too short in evolutionary terms for adaptation. Our immune system really doesn’t stand a fighting chance – the body needs thousands of years to adapt to such significant changes.

I hadn’t until this point in my fight against my autoimmune disease ever considered that environmental or lifestyle factors could be at play in not only disease activation but also in disease progression, or that they may be responsible for re-activating my disease, on the few occasions that I obtained remission. 

I turned to the scientific research and what I discovered was compelling. That while conventional western medicine played an important and integral role in my treatment plan and in saving my life multiple times. I now understood the importance of environmental toxins, both in the externally environment along with my internal environment. How these can trigger flares and/ or reactivate disease, and the importance of the mind -body connection as a part of stress management to help to minimise flares along with disease progression.

I am now three years + in remission after a six-month course of Rituximab, a monoclonal antibody often referred to as a biologic.

Through my own experience, I know first-hand the struggle of trying to navigate life after a diagnosis with an autoimmune disease, and like all chronic illnesses, the road can get a little bumpy at times. Mine had huge potholes that I often found myself at the bottom of, wondering if there was anyone out there in the world who understood and could give me a hand back up. It can be extremely confusing and frustrating dealing with conflicting advice, and extremely overwhelming trying to find accurate information and soul destroying when treatment options that have proven success in other countries are not approved (on PBS) for use as life-saving treatment here in Australia. It is at times lonely and isolating and keeping resolve and hope can be the biggest challenge of all. 

My journey back to health has dramatically changed me and the course of my life.

My mission now, quite simply to make a difference. To apply all that I have learnt along the way and hopefully help others who may not know where else to turn. Thus, the establishment of this not-for-profit organisation, so that we can provide resources and up to date information, along with a community hub for those with autoimmune disease to connect with others.

My dream is one day to see a “compassion clause” introduced in health legislation (here in Australia), so that those diagnosed with rare diseases have access to treatments available on the PBS that are approved for use in other diseases

My goal, to raise awareness and create a home base of sorts that we can all come together as a community to offer support for one another and share information. Additionally, and very importantly, to raise as much as we can to go towards research into better treatments and one day a cure for all autoimmune diseases.