Issue 02 Next Chapter

The year after developing hydrocephalus,
I went to my first WALK to End
Hydrocephalus in Washington, D.C.
Going to this event, meeting others with
the condition, and joining the Hydrocephalus
Association introduced me to
a supportive community that really gets
what I’m going through. I’ve led a team
of family and friends every year since
that first WALK to fundraise for research
to find a cure. I’ve also done panel discussions,
appeared in commercials, and
posted vlogs to share my experiences
and help others with hydrocephalus.
No one knows when my next surgery
will be. It’s something that my family and
I worry about since my condition could
worsen at any time without warning.
Numerous brain surgeries and long hospital
stays have also set back my education.
Classes are especially hard because
studying takes longer with my symptoms.
But I’m proud to say that I’m completing
my first semester with a full class load
this fall, which is something that I wasn’t
able to do in the last couple of years.
Even though life is harder now,
hydrocephalus hasn’t held me back from
achieving success. I’m a database engineer
on faculty research, and I’m an associate
at the 1882 Foundation, a DC-based
organization that promotes awareness of
the 1882 Chinese Exclusion Act and its
continuing significance today. I’m also a
Community Network Leader for the Hydrocephalus
Association and co-lead a
support group for adults in their 20s with
hydrocephalus. We connect through
Zoom every week and host speakers,
share our experiences, and chat with
each other. Some members hadn’t met
others with hydrocephalus before joining
these calls! Since starting the group
in May, we’ve grown to include over
90 members from across the country.
In this challenging time when social distancing
is needed for safety, connecting
with others is so important. I’m excited
for the future of this group, and I’m happy
that something good has come out
of such a difficult and uncertain year.
Lauren Eng
with
Hydrocephalus