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to make a correct diagnosis. Ho The AOSD patient has been information about AOSD can-
points out that it was because no running a Facebook page, “Aosd- not be found on its website. This
specific test is available to detect 成人史迪爾氏症 Adult onset means that in Hong Kong, no
the disease. still disease” since 2017, sharing AOSD patients, or their families,
information about AOSD and her have ever registered to be a mem-
“The doctors could only use the personal experience battling the ber of the support group.
method of exclusion. They gave illness.
me medications according to the “I hope it (my Facebook page) can
suspected causes and observed the “AOSD is so rare that information serve as a platform to build a com-
effectiveness of the medicines on about it is very limited. When I munity of AOSD patients and let
me,” Ho says. was diagnosed with the disease, I them know that they’re not alone,”
“ Candy says.

I hope it (my Facebook page) can serve as a plat- “AOSD is not a disease with ob-

form to build a community of AOSD patients and vious symptoms. It takes a very
long time for doctors to make

let them know that they’re not alone, an accurate diagnosis. It is very
stressful for patients when they do
” not know what is happening. I just
hope patients can find support
“I sought consultation from medi- felt lost and helpless,” she says. from my Facebook page,” Candy
cal experts of different specialties. Providing information on vari- adds.
My sample was also sent to Ger- ous rare diseases, Rare Disease
many for examination,” he adds. Hong Kong (RDHK) is the largest Over the years, she has gained
support group for rare disease over 250 followers, including

According to the National Organi- patients in Hong Kong. However, AOSD patients from Hong Kong
zation for Rare Disorders, AOSD
is a rare inflammatory disorder
which affects between one and
34 people per million. Symptoms
vary from high and spiking fevers,
joint pain, to others associated
with systemic inflammatory dis-
eases, such as having salmon-pink
rashes.

Candy*, 41, is one of the few in
this city whose story echoes with
Ho’s. She was diagnosed with
AOSD in 2013.

She suffered from recurrent fevers
for three months before she was Information about AOSD cannot be found on the
diagnosed. website of Rare Disease Hong Kong.