Idiopathic anaphylaxis – my experience

My name is Louise and I used to be a medical doctor.  I live in the small rural community of Mareeba in Far North Queensland.  Mareeba has a small outlying hospital, with Cairns being the closest tertiary centre 70km away. 

I was recently diagnosed with Idiopathic* Anaphylaxis after 18 months of more than 35 severe, life threatening episodes of anaphylaxis needing countless adrenaline infusions and three aeromedical evacuations.  

In some ways I am lucky that I live in a small town as the ED staff know me well and know how to best treat me when I present based on previous admissions. 

Having medical knowledge is both beneficial and detrimental.  I can pick when things are getting serious and I know the course I am likely to take.  I recognise the urgency in the medical team’s voices and the swiftness of their actions.  While I am in and out of consciousness I can gauge the severity of my reaction by the number of doctors and nurses greeting me at the door and the tears in my Mum’s eyes (she doesn’t cry much).  

I’m lucky to have a fantastic medical team supporting me; the paramedics, the emergency department staff and the ward staff at Mareeba Hospital.  The aeromedical retrieval team and the emergency department staff at The Cairns Hospital as well as my GP and allergy specialist.  I have reacted to the most innocuous of substances including sweet biscuits, diet cordial, yoghurt and the influenza vaccination.  This diagnosis has impacted my life greatly as I never know what is around the corner.  I would be lying if I said I was never scared, every day has the potential to be life threatening. 

My lifestyle has changed dramatically and I try to focus on the positives.  My diet is now mainly fruit, vege and fresh meat and I’ve been inspired to join the gym to aid my healthy change.  My family has been amazing, even changing their own diets to support the sudden direction my life has taken.  Being from a rural/remote area I have had to travel to get specialist help.  My Mum and I flew to Sydney recently to see a specialist and despite having to use all of my savings to get us there it was a trip well spent.  You can’t put a price on your health. 

I now have some hope with a solid prevention and treatment plan and amazing support from the people I have already mentioned.  We all face common challenges but with the right assistance and mindset we have the strength to deal with them.  One day at a time.

*Occasionally patients suffer from idiopathic anaphylaxis, where extensive evaluation fails to identify an underlying cause.