Community
You are probably not the only one in your postcode
Alpha-gal syndrome clusters geographically in a way most allergies do not. In the hotspot regions there are enough people for meeting in person to be genuinely realistic.
Regional groups
We are starting groups in the regions where cases cluster. These are informal: a coffee, a walk, a chance to compare notes with people who do not need the whole thing explained.
Sydney Northern Beaches
The most concentrated group of cases in the country. TODO: convenor and meeting details
Northern Rivers
TODO: seeking a convenor
Shoalhaven and South Coast
TODO: seeking a convenor
Sunshine Coast hinterland
TODO: seeking a convenor
Gold Coast hinterland
TODO: seeking a convenor
Online, for everyone else
Plenty of people are the only person they know with this. TODO: decide the platform and moderation approach
Would you convene one? It needs no expertise, just someone willing to pick a cafe and a date every couple of months. Get in touch.
Travelling with it
Two things make travel harder than it needs to be: alpha-gal is barely known outside a handful of countries, and the delayed reaction means you may be somewhere very different by the time you react.
Airlines
There is no standard meal code for this. Most people book a seafood or vegetarian meal and bring their own food as backup.
Translation cards
A card explaining the allergy in the local language is far more useful than trying to explain at the table. TODO: produce translated cards
Your medication
Carry your adrenaline device in hand luggage with a letter from your doctor, and check the rules for each country you transit.
Ticks elsewhere
Different countries, different tick species, same underlying issue. Prevention advice varies, and so does removal advice.
Where else to go
We are one part of a small ecosystem, and the others do things we do not.
- ASCIA for authoritative clinical guidance and action plans.
- Allergy & Anaphylaxis Australia for a national helpline and broader allergy support.
- TiARA for tick allergy research and awareness.
- Alpha-gal Information for the international picture, noting that some of its guidance, particularly on tick removal, is written for a US context and differs from Australian advice.
If you are in crisis rather than in need of information, please contact your doctor, or Lifeline on 13 11 14. Living with a chronic condition takes a toll, and that is a reasonable thing to need help with.