Medinah barely leaves the house – every time she does, people will start coughing and sneezing. Her condition is so rare it’s simply known as People Allergic To Me. Sufferers tell Sky News of “unbearable” lives as they cope with feeling they make other people ill.
On rare occasions that Medinah leaves her home, people around her will cough, sneeze and rub their eyes.
“I am the allergen,” the 23-year-old, who did not want her full name used, tells Sky News.
She is one of a group of people with a condition so rare it does not have an official medical name.
It is known simply as People Allergic To Me – often shortened to PATM.
Medinah spent a year online searching her symptoms before she found social media support groups and the name that had been coined there.
During those months, she worried she was “crazy”: “I thought, yes, I’m losing it now. But then after a year and the constant reactions with people, I just realised this cannot be in my head, I can’t be crazy, I’m seeing this in real time.”
Hay fever-type symptoms
Several of the people in those groups spoke to Sky News. They described people developing hay fever-type symptoms in their presence, saying as much as 90% of a room would start coughing, choking, or sneezing when they entered.
They detailed the immense toll of isolating themselves to avoid these reactions. Some said they had been suicidal; others talked of losing friends, giving up jobs, and spending hundreds of pounds on possible remedies.
Last year, PATM sufferers had a glimmer of hope. A researcher in Japan published the first cohort study on the condition – and it indicated there could be a physical cause.
Speaking to Sky News from Tokyo, Professor Yoshika Sekine from Tokai University describes what he found when he compared the skin gases emitted by 20 people with PATM to a control group of 24.
He discovered the PATM group had “very specific characteristic skin gas patterns”, giving off higher levels of certain chemicals that are known to provoke respiratory symptoms in people exposed to them.
One of them, toluene, is used in the manufacture of explosives, paints and plastics and as a solvent in some types of paint thinner and glue. It can cause irritation to the eyes, nose, throat and respiratory tract, according to Public Health England – and people with PATM emitted 39 times more of it than the control group.
The other chemicals Prof Sekine identified as being particularly important are sulphur compounds, which have a “very strong, pungent odour” and hexanol, which has a hay-like smell.
These chemicals are known to trigger respiratory symptoms and skin irritation and are both linked to sick building syndrome, a condition recognised by the World Health Organisation where people are made ill by the building in which they live or work.
The study concluded: “We must carefully consider the possibility that the chemicals emitted by the PATM group may induce chemical intolerance in those around them.”
‘You feel you don’t have the right to live’
It’s been about 18 months since Fahima started noticing reactions from people around her.
“Wherever I go, if I go into a shop, if I’m out, if I walk past someone, people will sneeze and hysterically cough,” she tells Sky News.
In that time, she’s shifted to working entirely from home. She has stopped attending her nine-year-old son’s school plays because “I don’t want to impact the children”.
She shops in the early, quiet hours. The school run is the only time she regularly leaves the house.
“From the minute I wake up, the first thought is, how are people going to react to me today? I have to minimise myself so that I don’t impact other people.”
She says she also gives off an odour that developed from sweat to fish and then faeces.
There is a medically recognised condition called trimethylaminuria (TMAU) – sometimes called “fish odour syndrome” for the smell sufferers emit – that is sometimes grouped together with PATM.
However, there are PATM sufferers who say their symptoms are not accompanied by any discernible smell.
Dr Robin Lachmann, one of the country’s leading doctors specialising in TMAU, tells Sky News that unlike PATM, TMAU is a condition “which we understand well and can treat”.
A key difference is that while people around the patient may find the odour unpleasant, “these responses aren’t allergic”.
Fahima took a test for TMAU which came back negative – but even getting the test took a year of “legwork” on her part, she says.
“With PATM, doctors say even if you want to get tested, there’s no diagnosis. There’s no way to treat it.”
The reactions Fahima gets aren’t just involuntary coughs and sneezes, she says, but insults and abuse.
“You know what? I don’t blame people. Especially the people that are having allergic reactions to us, we’re physically making them sick, so I don’t expect them to have any other reaction.”
But it’s “draining”, she says, and makes her “incredibly depressed”.
“It makes you feel like you don’t have the right to live, almost. Because why should you be in a place making someone else feel uncomfortable?”