SIXTEEN people gathered at the Nambucca Valley Phoenix in Bowraville on Thursday 3 September for the first meeting of a new support group for people living with Alpha-Gal Syndrome (AGS)/Mammalian Meat Allergy (MMA), a potentially life-threatening allergy triggered by tick bites.
The three-hour, workshop-style session was convened by Michelle Barber and Marion Syratt, with the aim of supporting people affected by the condition.
Ms Barber has lived with the illness for 19 years, while Ms Syratt has a family member awaiting diagnosis.
Speaking of her experience at the workshop, Ms Syratt said, “For me, the standout points were how much more real it was to hear people speaking about their experiences, as opposed to reading about it; and the variety of experiences.
“It is a very challenging thing to face.”
Discussion ranged from managing reactions with EpiPens and antihistamines to safe diets, tick-removal safety, and the keeping of guinea fowl to control tick numbers.
Attendees also compared notes on diagnostic pathways.
The cost of adrenaline devices was another concern — up to $120 each without a PBS authority prescription.
Getting that authority requires a GP to assess significant risk of anaphylaxis, either with a specialist’s input or following a hospital-treated anaphylactic reaction, before cheaper follow-up scripts become straightforward.
A lack of awareness among doctors was another theme, with attendees pointing to just a handful of GPs across the region — two in Bellingen and one in Bowraville — known to have an interest in the condition.
“They definitely do need to be more interested and have more training in it, and in understanding the symptoms that present,” Ms Barber said.
Even though Dr Gul Hertzberg, a retired Bellingen GP, did a lot to raise awareness — including an appearance on SBS’s Insight program in its October 2016 episode “Tick Sick” — Ms Barber said there was still a long way to go.
“It becomes your life,” she said of living with the allergy.
“There’s no more fun barbecues, sitting around chatting while it’s cooking — I can’t be anywhere near that.”
The meeting comes months after a coronial inquest confirmed 16-year-old Jeremy Webb, of the NSW Central Coast, as the first Australian to die from AGS, after a 2022 reaction to beef sausages initially misdiagnosed as an asthma attack.
The Mid North Coast AlphaGal Syndrome Support Group launched on Facebook in May 2026, and people are welcome to join at any time.
Organisers of the Bowraville event are also planning another meeting in around two months, with a Bellingen workshop also mooted.
Inquiries can be directed to Marion (0400 828 471) or Michelle (0436 365 698).
By Jessica MILLER
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