T HE G REEN W AVE G AZETTE
P AGE 10
Ehlers Danlos Syndrome: A Rare Genetic Disorder
This is a Best of School
Newspapers On-Line
article, also published at
bestofsno.com
Emily Johnson (Staff Photo)
“Five surgeries,
countless
procedures, and
hundreds of
appointments
later, I was
diagnosed with
…..Ehlers Danlos
Syndrome
(EDS).”
Emily Johnson
Dislocations and sprains are common symptoms
Emily Johnson
Staff Writer
A simple leg kick at cheer practice
caused my whole world to turn
around. As I kicked my leg up, I felt
a sharp pain and heard a popping
noise. Unable to keep my balance, I
fell to the ground. I didn’t know
what was causing these symptoms,
but I knew that something was
wrong in my body.
My mom took me to the clinic, and
they referred us to the orthopedic
department. The next day, I had my
first orthopedic appointment; there
would be dozens more. We learned
that I had dislocated my knee, which
doesn’t typically occur without
some sort of trauma such as a hit in a
football game or a car accident. I
was placed in a stabilizing knee
brace, put on crutches, and physical
therapy was scheduled for the next
three months. When my recovery
took twice as long as it should have,
our fears that something was really
wrong were realized. I was only 13.
After my lengthy recovery period, I
was finally cleared to start cheering
again with the rest of my friends.
However, I was unable to make it
through the season as my knee began
giving out beneath me. I was placed
in wheelchair to reduce my risk of
falling. After this incident, my doctor decided that there was no way to
fix my knee without surgical intervention. The surgery was successful, and after six months of physical
therapy, I regained my ability to
walk, until, my other knee started
dislocating, which also required
surgical intervention.
Five surgeries, countless procedures, and hundreds of appointments later, I was diagnosed with a
rare, genetic connective tissue disorder known as Ehlers Danlos Syndrome (EDS). EDS is a group of rare
heterogeneous connective tissue
disorders caused by a mutation, and
leading to a deficient amount of
collagen in the body. With a lack of
family history regarding this disease,
the question arose as to how I had
acquired it. It turns out that my
condition was a spontaneous mutation. This means that the
“perfect” (how ironic) conditions to
support a mutation were present in
my mother’s womb when I was
conceived. (Information gathered
from the Ehler Danlos National
foundation at www.EDNF.org.)
Collagen is a vital protein most
commonly found in connective
tissue that is often referred to as the
glue that holds your body together.
Without it, your body could quite
literally fall apart. Decreased
amounts of collagen in the body.
The decreased amount of collagen in
the body causes the connective tissue
to be too loose, resulting in a condition known as hypermobility. Connective tissue is very widespread in
the body, forming everything from
parts of organs to skin to the ligaments and tendons that hold your
joints in place. It stands to reason
why EDS can be so detrimental to a
body.
Since my diagnosis, I have undergone five more surgeries, countless
more procedures, and hundreds of
more doctor’s appo