Emily Pearson was 8 years old when the attacks started.
asserted
attacks → start → ?
Just minutes in the sun would leave her hands and feet hurting.
asserted
minutes → leave → hands
Her extremities "felt like they were in a hot oven" while being poked "with pins and needles."
asserted
they → feel → pins
A short while outdoors could leave her in pain for days.
uncertain
while → leave → days
Worst of all, no one knew why.
asserted
one → know → all
Over the next decade, Pearson's parents tried to identify the cause of her reactions.
asserted
parents → try → reactions
Sunblock didn't help.
asserted
Sunblock → help → ?
She started wearing protective clothing and staying indoors as much as possible.
asserted
She → start → clothing
Vacations at her family's Minnesota cabin became an endurance test.
asserted
Vacations → become → cabin
If she slipped up and found herself in the sun for too long, her hands, feet and face paid the price.
asserted
hands → slip → price
I would never wish that pain upon anyone, because it's so horrible," said Pearson, who lives in Minneapolis.
asserted
who → wish → Minneapolis
When she was 17, a doctor at the Mayo Clinic in Rochester, Minnesota, made the diagnosis of erythropoietic protoporphyria, a rare skin disorder that means a person is essentially allergic to the sun.
asserted
person → make → sun
Having an answer was a relief, Pearson said — but it also meant she had to grapple with not being able to do much about her condition.
asserted
she → have → condition
Pearson had been a competitive swimmer for 12 years, then transitioned into running half-marathons out of high school.
asserted
Pearson → transition → school
She had to either layer up or run in the dark, at sunrise or at sunset, to avoid having a reaction.
asserted
She → have → reaction
But the difficulties were worth the joy it brought her, she said.
asserted
she → bring → her
Pearson dreamed of running a marathon, but believed her condition made that impossible.
asserted
that → dream → marathon
Throughout college, braving the sun for a few hours of fun without protective gear would leave her "in severe pain" later.
asserted
braving → brave → pain
"Going to the grocery store, going to get gas, going for any kind of car ride or working outside, you constantly have to think about what you're doing and how it's going to affect your health, and dealing with those consequences after," Pearson, now 25, said.
asserted
Pearson → go → consequences
It was a big mental load, and it was never-ending.
asserted
it → end → ?
In 2025, Pearson volunteered at Sun Escape, a weekend camp for kids with EPP and similar conditions.
asserted
Pearson → volunteer → EPP
There, she learned about a clinical trial for a drug called bitopertin.
asserted
she → learn → drug
She was intrigued and searched for more information.
asserted
She → intrigue → information
"I was very wary of it, like, 'Does it really work?
asserted
it → work → it
I know it works for other people, but will it work for me?'"
asserted
it → know → me
Pearson remembered.
asserted
Pearson → remember → ?
"I can't believe I'm hearing this"
asserted
I → believe → this
Bitopertin works by targeting protoporphyrin IX, a naturally occurring molecule in the skin that is activated when people are exposed to sunlight, said Dr. Sioban Keel, a porphyria expert at the University of Washington who is involved in the clinical trial.
asserted
who → work → trial
In patients with EPP and similar conditions, mutations mean the body creates too much protoporphyrin IX, resulting in painful reactions.
asserted
body → mean → reactions
Bitopertin, taken as a once-daily pill, lowers the amount of protoporphyrin IX in those patients, Keel explained.
asserted
Keel → take → patients
Clinical trials in the U.S. have four phases, as defined by the U.S. Food and Drug Administration.
asserted
trials → have → Administration
The first stage involves a small group of participants and determines if a drug is safe and sets its dosage.
asserted
drug → involve → dosage
In the second phase, up to several hundred people are studied for months or years.
asserted
people → study → months
This is the stage that determines how effective a drug is, as well as what side effects it may have.
uncertain
it → determine → effects
The third and fourth stages expand that to an even larger population for longer periods.
asserted
stages → expand → periods
After the process is complete, the FDA reviews the data and decides whether or not to approve the medication for use in the general public.
asserted
FDA → review → public
As a participant in the trial's second stage, Pearson began taking bitopertin regularly in July 2025.
asserted
Pearson → begin → July
She had regular appointments with physicians in Boston to follow her progress.
asserted
She → have → progress
Within weeks, she began to do "really, really well," and her tolerance to the sun started to increase.
asserted
tolerance → begin → sun
Keel, who did not treat Pearson, said she's heard similar stories from other patients involved in the trial.
asserted
she → treat → trial
…and 24 more, not listed.
The Aporia
