regular time, good nutrition and hygiene
can keep body working smoothly.

Common treatments that help
with EDS include regular physi-
cal therapy, pain medications for
symptomatic relief and mental
health services, he says.

And one of the most important
things is being active.

Some might be surprised to
learn what you can and can’t do
with EDS. Dr. Kristen Kouvel, phys-
ical therapist at Children’s Hospital
of Philadelphia, has worked with EDS
patients for 10 years. Being active when
young lessens risk for comorbidities, she says.

When Andy stopped dancing in prep for a hip
surgery, they noticed an immediate difference. Though 15
or more hours per week was too much, having some dance alongside
PT provides the best result.

Many kids and teens with EDS have active hobbies, too. Zach still
continues with sports such as rock climbing and swimming, and
though Berman’s daughter Abby (who also has symptoms of EDS)
can’t participate in gym class, horseback riding is a favorite.

It’s not as scary as it might seem. It’s scarier not knowing what
you have.,” Zach says. “There are more things you can do once you
know.” Even with appropriate treatments, there’s no easy fix that pre-
vents all the bad days. But Ren found local and international sup-
port groups, and even a close childhood friend who was later diag-
nosed with EDS.

“It’s helpful knowing there are so many other teens like you out
there,” Ren says. T
KNEES: ANDRIANO_CZ / ISTOCK / GETTY IMAGES
nary state; it is a lived experience (Halv-
erson et al., 2021),” notes the Ehlers
Danlos Society.

A lack of information on the dis-
order has led many patients to do
their own research—including a
research team of students with
EDS who might have identified
a gene mutation associated with
hEDS at the Norris Lab in South
Carolina. Though the genetic link is not de-
finitive, it’s common to see hEDS run
in families. Some EDS patients, such as
Zach’s mother Debbie—who is managing
director at the research foundation—found
out later in life.

Debbie Kushner recalls finding out her pain was not
regular when her question, “You know like when you run down
stairs and every step just hurts your body?” was met with shock.

If you have pain as your baseline, you might think everyone else
does, too.

“For the longest time, until I was 11, I had no idea what was nor-
mal,” Ren says. “I played competitive soccer, and I always thought I
was a wimp because I ran a lot slower than the other kids, and I was
in a lot of pain.”
Andy says there’s a common phrase in the medical community
that trains doctors not to ignore commonplace causes in favor of
more unique conditions. The problem: they tend to assume the
more common “horse” over the unusual “zebra.”
The EDS community has reconfigured the phrase: “Well, some-
times it is a zebra, and no two stripes are same,” Andy says.

REN ZACH
ANDY (As pictured) Zach enjoys sports, music and professional acting and hopes to study medicine or law. Ren loves showing dairy
goats and wants to be a child life specialist. Andy loves musicals, dance and crocheting stuffed animals.

26 Washington FAMILY OCTOBER 2022
PHOTOS COURTESY OF ZACH, REN, AND ANDY
LIFE AS A ZEBRA
Living with EDS is a challenge, but there are many accommodations
both at home and in the classroom that can help children better
navigate daily life.

At school, Andy reduces stress on their back with digital book
options, and teachers provide extended time on work and flexible
seating so they can get up and move
around as needed.

Ren used to wake up with more
dislocated joints, but strategic place-
ment of pillows and blankets helps.

Jain also recommends using good
health practices — going to bed at a



THE ABC ’S OF SPECIAL NEEDS
ABA Applied Behavior Analysis
ADA Americans with Disabilities Act
ADHD Attention Deficit Hyperactivity Disorder
ADL Activities of Daily Living
ALJ Administrative Law Judge
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ED Emotional Disturbance
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MDH Maryland Department of Health
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M-PAC Maryland’s Parent Advisory Council
MR Mental Retardation
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MSDE Maryland State Department of Education
NICU Neonatal Intensive Care Unit
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OCR Office for Civil Rights,
U.S. Department of Education
OGCSHCN Office for Genetics and Children
with Special Health Care Needs,
Maryland Department of Health
OHI Other Health Impairment
OT Occupational Therapy
P&A Protection and Advocacy Agency
PBIS Positive Behavioral Interventions
and Supports
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PLOP Present Level of Performance
PT Physical Therapy
RTI Response to Intervention
SCC State Coordinating Council
SEA State Education Agency
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SLD Specific Learning Disability
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TS Tourette Syndrome
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or speech impaired)
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