Thirty-year-old Joey Tuan can pinpoint
the exact moment he got sick in 2005. It
was mile three of a 17-mile hike at Half Dome in Yosemite. Before he reached
that pivotal instant that would change his life, he says he was in the best
shape of his life—and having the time of his life. “I was an adrenalin junkie,
a classic type A pusher, working 60 hour weeks as a dispute investigations consultant
in San Francisco, going to the gym four times a week, studying for the
Chartered Financial Analyst exam, and I’d just graduated from Berkeley,” Tuan
recalls. “I jumped at any opportunity to
try new restaurants and hang out at bars with friends. The word ‘stop’ wasn’t
in my vocabulary.”
Until mile three, that is. Tuan struggled through 14 more miles and returned
from his hike sporting a high fever. He
was soon diagnosed with mononucleosis and then made the mistake of going back
to work after only three weeks. He was nowhere
near recovered when he jumped at the opportunity to go to Shanghai for a
business trip. After two weeks in China, he developed a throat infection. Upon
returning home, he couldn’t drag himself to work. Instead, he quit his job and
moved back home in Los Angeles, spending the next six months bedridden, cared
for by his parents.
It would take 10 months for Tuan to get a
diagnosis of myalgic encephalomyelitis (ME), formerly known by the trifling
name chronic fatigue syndrome that doesn’t begin to describe the level of disability
that the disease causes. He learned about ME not from his family doctor but through
an online forum that described his symptoms perfectly and listed ME-literate
physicians. One nearby diagnosed Tuan. “Until
that point, top infectious disease specialists at UCLA kept saying, ‘It’s just
mono,’ ” Tuan says.
Being Invisible
The diagnosis was only the beginning of
his journey. Tuan’s spent more than $200,000 on medications, supplements and
alternative treatments trying to get well. But year after year, nothing really
helped. No matter how much he slept, he didn’t feel rested. His mother prepared
his meals because he couldn’t stand up to cook.
“I’d go on my computer, read forums and research for 30 minutes until my
head started throbbing, and I had to stop,” he says. “At night I’d
take a bath because I couldn’t stand up for a hot shower, and then I’d take
sleeping pills to force sleep. I was
basically living but not alive.”
But the worst part wasn’t the illness: It
was being invisible and not being believed.
“Because I looked mostly healthy on the outside, friends, some family
members, even doctors assumed I was either lazy, or that my illness was
psychological,” he explains. “It’s not uncommon to hear patients say they’d
rather have cancer so that others will believe they’re sick.”
Tuan was lucky enough to have supportive
parents. But even they didn’t know the full extent of his illness. “When we
traveled together to Germany in 2009 for treatment, I had to ask for a
wheelchair at the airport. That’s when my
mom realized how disabled I really was and broke down in tears,” he says. After
six years with ME, what finally turned things around for Tuan was experimenting
with living in a toxin-free environment in the desert outside Las Vegas. It had helped a fellow patient he met on the online
patient-support boards, and Tuan thought it was worth a shot.
Match Patients
With his health significantly improved,
he now wants to help other patients avoid the painful years he spent trying to
find a way out of his illness. “What was so frustrating for me was when a
patient would say treatment X was helpful, I had no idea if they had what I
had,” Tuan says. “Were our symptoms, lab
work and genetics the same? ME is such a
poorly understood disease, and some patients work full time while others are
bedridden. Some respond amazingly to antivirals, whereas others get worse.
Sharing information with each other was as potentially risky as it was
potentially helpful, because we’re such a mixed bag.”
Necessity, for Tuan, became the mother of
invention, and he started a free online group, HealClick (www.healclick.com) to help patients. “For treatment reviews to help ME and other
poorly understood conditions, we match patients up based on their entire condition,”
he says. His first challenge was to see if patients would even use another
social network other than Facebook, so he started out building one just for
young adults with ME, fibromyalgia and Lyme disease.
Patients flocked to the site, so Tuan and
his partners decided to go for it and build a platform that would cater to autoimmune
patients of all ages. They began building a social platform in 2013 and in July
launched their alpha with a content feed that could be filtered by specific
diagnoses. In December, they launched their beta personalizing content
automatically to the patient’s entire condition. In addition to ME,
fibromyalgia and Lyme disease, HealClick is geared to patients with poorly
understood, frequently overlapping autoimmune conditions, including lupus and
arthritis. The site aims to be a warm
and social place—not unlike Facebook.
Patient-driven Revolution
Content caters not only to a patient’s
condition but also to symptom severity, treatment responses and, soon, lab work.
More importantly, data on HealClick goes right into a de-identified database
for medical research, according to HIPAA guidelines, which Tuan will share with
researchers and companies with a track record of helping patients. “Patients
identities will always be protected,” Tuan maintains. (To read HealClick’s privacy policy, click here.)
Tuan’s goal is to create a patient-driven
revolution of personalized health information and research data. “If we can get enough users and keep
advancing our patient-matching algorithm, we can start correlating
co-conditions, symptoms, treatments and labs for patients to discuss with their
doctors,” Tuan says. “We hold a power in numbers that could be game-changing.
If we can arm ourselves with a database that truly captures our health over
time, we can then present ME and other diseases as diseases worth solving.”
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