FLEXIBILITY IS USUALLY DESCRIBED AS A POSITIVE TRAIT IN CHILDREN.

THEY MIGHT BE ABLE TO DO PARTY TRICKS LIKE BEND THEIR PINKY
BACKWARDS OR ALWAYS HIT A SPLIT IN GYMNASTICS. BUT, IF THOSE
SKILLS COME WITH CHRONIC PAIN, YOUR CHILD COULD BE LIVING
WITH A DISABILITY WITHOUT EVEN KNOWING IT.

Ehlers-Danlos syndrome (or syndromes) (EDS)—which
affects the range of mobility in the joints—is often un-
derdiagnosed in children, leaving many navigating mul-
tiple specialists and chronic pain for years— sometimes
even into adulthood.

Yet with the ebb and flow of symptoms, it’s a condition
that can be misunderstood by peers—leading many to
wonder, “Is it even real?” Children with invisible disabili-
ties face the same questions every day.

For the Invisible Disabilities Association’s Invisi-
ble Disabilities Week, Oct. 16-22, we talk to local teens
about what it’s like to experience a disability the world
cannot always see.

WHAT IS EDS?
Ehlers-Danlos Syndrome (EDS) has three main types, but
the most common is hypermobile EDS (hEDS) in which
there is a greater range of mobility in the joints.

Dislocations, abnormal skin issues related to weakened
connective tissue—stretch marks, abnormal wound healing
and scarring—and loose and sensitive skin, are all typical,
says Dr. Mahim Jain, co-director of the connective tissue
multi-disciplinary clinic at Kennedy Krieger Institute.

Without strong connections, “ultimately it leads to
a lot of instability in the body, which can cause all
sorts of osteopathic, orthopedic and muscular
dysfunctions,” adds Jennifer Berman, of Pikes-
ville, who co-founder of the Ehlers-Danlos
Research Foundation with Dr. Elizabeth Zing-
man, of Silver Spring.

Sometimes injuries can occur even just get-
ting bumped hard enough in the hallway on the
way to class.

Because connective tissue disorders affect all
parts of the body, it’s often tricky to recognize the big-
ger picture— unless you know what to look for—which
is why many patients, especially children, can go decades
without a diagnosis.

‘IT’S JUST GROWING PAINS’
Ren Marrill, 16, first noticed symptoms around age 7, but
doctors didn’t start to suspect anything until age 11 when
a sprained ankle turned into complex regional pain syn-
drome. “I was getting a lot of pain in my ankles and back and,
you know, like any other person I went to my primary care
doctor—my pediatrician—and he said, ‘oh, it’s just grow-
ing pains.’ Yeah, it really wasn’t,” Ren says.

Because the criteria for determining joint flexibility
starts in the teenage years, it can be hard to diagnose chil-
dren, but if the pain persists and interferes with daily ac-
tivities, likely it’s EDS, Jain says.

Ren was finally diagnosed with EDS a little over a year ago.

Others have had similar stories with hEDS. Zachary
Kushner, 15, was diagnosed in 2021, nine years after first
noticing symptoms of small fiber neuropathy and pain.

Sixteen-year-old Andy, of New Market, received a diagno-
sis in 2021 after 8 years of symptoms.

Both were treated by Dr. Jain.

Andy recalls they got injured a lot more than their fel-
low dancers but didn’t know why. There was never a cause
from doctors. “They would just give individual diagnoses
for each acute problem,” Andy says.

The onset of EDS can be gradual or more sudden, as in
the case of a physical trauma, Jain adds.

That’s what happened to Zach. The Hyattsville teen first
started developing health issues after an allergic reaction
at age 5. First came the neuropathy pain and then concus-
sions from small incidents that wouldn’t normally con-
cuss—since he was more prone to these injuries with EDS.

His doctors prioritized treating his acute concussions
rather than trying to piece together a connection with
other developing symptoms.

When it comes to diagnosing EDS, doctors also tend
to more often recognize the symptoms of two of its most
common comorbidities—the dizziness associated with
POTS (a form of disautonomia) or the characteristic
rashes of mass cell activation syndrome, Jain says.

UNDERDIAGNOSED, NOT RARE
Though most types of EDS are “rare to ultra-rare,” hEDS
is not. Experts say prevalence figures are underestimates
based on underdiagnoses and misdiagnoses, which is im-
portant for healthcare professionals to know because com-
mon conditions are given more priority and resources.

“For too many in our community, this is not an imagi-
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