Diagnosed after anaphylaxis
I ended up in emergency and nobody could work out why, because I had eaten dinner five hours earlier and that was not on anyone's list of suspects. It took a second admission before someone asked the right question.
Stories
The thing most people read first
After a diagnosis, the most useful thing is usually somebody else's account of the same thing. How long it took, what they were told instead, and what turned out to be easier than they feared.
Some stories below are placeholders written for this prototype. They are composites illustrating the format, not real people. Every real story is published with the contributor's explicit consent and with their chosen level of identification.
The part that was easier than expected
Honestly, the food was the easy bit after a month. The hard bit was my father-in-law, who took it as a personal insult that I would not eat his lamb. That took longer to sort out than the diet did.
Three years, diagnosed as IBS
Nobody ever saw the hives, because they only ever happened at night. What they saw was a woman with stomach pain, so I got told it was IBS and sent away with a diet plan that had beef in it.
Six years to diagnosis
I was waking up at two in the morning covered in hives about once a fortnight. Six years of that. I had been tested for everything. It was my sister-in-law, who is a nurse in Queensland, who asked whether I ever got ticks in the garden.
Why we collect these
Three reasons, and they are all practical.
They help people recognise themselves
Most people do not go looking for "alpha-gal syndrome". They go looking for "hives at night after dinner". Stories are how they find their way here.
They shorten someone else's diagnosis
The average path to diagnosis is measured in years. Every story that describes the delayed reaction clearly is a chance for someone to ask the right question sooner.
They are the evidence of the human cost
Prevalence data makes the case to researchers and funders. Stories make it to everybody else.
You stay in control of your story. You choose how you are credited, you can review the final version before it goes up, and you can withdraw it at any time and we will take it down.