A woman wakes up in the middle of the night in
severe pain—her ribs have fallen out of place, again.
Exhausted, she relocates them and tries to sleep, hoping her
ribs would stay put for longer than 10 minutes this time.
For 7 years, this young woman had been
suffering from painful, unexplained issues.
It started with her shoulder popping out,
but now it’s also her jaw, hips, and ribs.
Any body part can dislocate without warning.
Mystified doctors didn’t have any solutions for her, and she
had given up hope on ever getting better—until one night, while
watching Grey's Anatomy, she saw her life playing out on the screen.
She finally had the answer.
She wasn't alone.
Let’s get into it!
Emilie Levy, a 22-year old young woman from Israel,
had a string of concerning health experiences, but she
and her doctors were never able to find an explanation.
Her wrists and ankles hurt constantly, but there seemed
to be no cause, and in her teen years she experienced
multiple dislocations of her shoulders, hips, jaw, and ribs.
It was physically painful, but also frustrating
to never know why this was happening to her.
Then, one day, Emilie was shocked to suddenly
see her experiences being shown on TV.
She was watching the popular medical show “Grey’s Anatomy”,
and a female patient was admitted after collapsing.
She said she had a hangover after just one drink, and told the doctors to
just pop her shoulder back in place as her parents had done multiple times.
When asked about other pains, she casually
mentioned that she was in constant daily pain.
Emilie remembered her own experiences of being immediately
hungover from only a little bit of alcohol, and her struggle
with dislocations in her body, joint pain, and injuries.
Captivated, she watched intently for a
possible answer to her lifelong medical issues.
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Captivated, she watched intently for a
possible answer to her lifelong medical issues.
The woman in the show was diagnosed with Ehlers-Danlos
syndrome, a hereditary condition that causes stretchy and
fragile skin, as well as joints that are overly flexible.
Relieved to finally have an answer, Emilie went to the
doctors to learn more about Ehlers-Danlos syndrome, or EDS.
But everyone dismissed her.
They said her dislocations were due to a different
condition called hypermobility syndrome, which
leads to very flexible joints that can cause pain.
Emilie knew in her heart there was more to the story
than that, and, finally armed with some knowledge,
she was determined to find the real answer.
She sought out a second opinion and was eventually
diagnosed with EDS, just like she suspected.
Emilie is not alone in her experience
struggling to get a correct diagnosis.
While EDS is very uncommon, patients often endure
people not taking their symptoms seriously.
In another case involving a young woman, Gabriella, she suffered painful
dislocations and injuries for years before people really listened to her.
Gabriella was a dance major in university.
In her first year, doctors found a benign tumour on
her vertebrae that required surgery and time off from
dance—it was a difficult turn of events, but necessary.
Unfortunately, after the surgery, Gabriella never felt fully healed.
She felt pain in her neck and her body didn’t feel quite right, but
the doctor kept telling her this was normal and that she would be fine.
Two years later, Gabriella had a follow-up tumour removal
surgery as well as another spine procedure to ease her back pain.
But her body still hurt all over, her knees gave out
constantly, and her scars looked wide and unhealed.
One day, she saw a video of a girl explaining EDS and, just
like Emilie, Gabriella immediately recognized her condition.
She told her mom, who dismissed her concerns by
telling her not to overreact or worry about it so much.
But a year later, Gabriella went back to school to
study dance and her dislocations only got worse.
On just her third day back, she was walking
to class and her right knee came out of place.
The incidents piled up over months, but she continued
to brush it off, like her doctor and mother told her to.
Then, the COVID-19 pandemic struck, and Gabriella went to live at home.
After seeing it with her own eyes, her mother
finally realized what her daughter was going through.
Her mom ended up having to constantly put
Gabriella’s body parts back into place.
Even something as simple as taking a bath was
almost guaranteed to result in a dislocation.
Gabriella couldn’t even walk without her legs giving out, and on top
of that she was having gut issues and throwing up most of her meals.
For years, Gabriella had tried to keep
her head high and live through the pain.
As a child, she was easily injured and deep
down she had known something was wrong.
After several incidents of passing out as a teenager,
she was diagnosed with Postural Orthostatic Tachycardia
syndrome, a condition that affects blood flow.
At 17, she dislocated her shoulder for the first
time in the middle of an exam and kept going!
But the pain was increasing, and it was too much to bear.
After going from doctor to doctor for a year and a half, Gabriella
finally saw a geneticist who told her she probably had EDS.
After that, her life became a string of medical appointments
with cardiologists, rheumatologists, and gastroenterologists.
She had to give up dance as well as most physical activity
and is adjusting to the fact that her life can’t be normal.
Still, she says she is grateful for the people
in her support system who keep cheering her on.
So, though a diagnosis is a relief, it’s only the
beginning of learning how to manage this rare condition.
Let’s take some time to understand EDS.
Ehlers-Danlos Syndrome are actually a group of genetic
conditions that affect a person’s connective tissue,
which provide structure and support all over your body.
This tissue is in your skin, tendons, ligaments,
blood vessels, internal organs, and your bones.
There are different types of EDS, but they share similar
symptoms across the board, including overly flexible joints,
stretchy skin, and delicate skin that is easily injured.
Thirteen different forms of EDS have been identified, with hypermobile
EDS and hypermobility spectrum disorders being the most common ones.
These types result in loose, easily dislocated joints,
joint pain, extreme tiredness, fragile skin, dizziness,
and issues with organs, digestion, and bladder control.
Hypermobility and its complications occur on a spectrum,
with EDS on one end, and hypermobility on another.
Classical EDS is a less common type that affects the skin more,
while it also leads to overly flexible joints and dislocations.
An affected person may have stretchy skin, very
smooth skin that bruises easily, and skin that splits
easily—especially over the forehead, knees, skins, and elbows.
They may have wounds that heal very slowly and leave wide scars
behind, as well as hernias and organs that slip out of place.
One of the most serious types in the spectrum is
vascular EDS, found in 1 in 50,000 to 200,000 people.
This rare version affects blood vessels and internal organs—organs
can split open and bleed enough to be life-threatening.
Symptoms of vascular EDS include easily bruised skin, thin skin, visible
small blood vessels, fragile blood vessels prone to tearing, organ issues
like womb tearing and lung collapses, hypermobile fingers and toes, and
facial features like a thin nose and lips, big eyes, and small ears.
Other types include
Periodontal EDS, which specifically affects the gums and teeth.
Brittle cornea syndrome, a condition that
affects the clear layer covering your eye.
Spondylodysplastic EDS, which leads to
abnormalities in the skeletal structure.
Kyphoscoliotic EDS, the main symptom is spine curvature
that starts in childhood and gets worse over time.
Dermatosparaxis EDS that includes severe
bruising and fragility as well as sagging skin.
Arthrochalasia EDS, characterized by hip
dislocations and extreme hypermobility.
Musculocontractural EDS, which affects the muscles
and leads to low muscle tone and abnormal joints.
Myopathic EDS that leads to muscle atrophy and weakness.
Classical-like EDS that doesn’t include
scarring but shares other signs of classic EDS.
Cardiac-valvular EDS, a very serious type
characterized by issues with heart valves.
It was only in March 2017 that the diagnosis
of EDS syndromes improved significantly.
90 EDS experts around the world came together to create a cohesive
criteria for diagnosis, and thirteen types of EDS were identified.
The specific gene mutations that cause each one have been
confirmed—except for hypermobile EDS, the most common one.
EDS syndromes are genetic and passed on from parents to their children.
Some types fall into a dominant hereditary
pattern, while others are recessive.
Dominant inheritance means the EDS type can be passed on by
one parent, with a 50% chance for each child to develop EDS.
With recessive inheritance, the faulty gene must come from both
parents, and there is a 25% chance for each of the children to have EDS.
Diagnosis includes going over family medical history, a genetic blood
test, a physical exam, and a person’s symptoms and medical history.
Each type of EDS is distinct, so you can’t inherit a different type than
the one your parent has or have one type turn into another one over time.
Many times, like we saw with Emilie and Gabriella, children with
EDS have mild symptoms that go on for years without being noted.
Diagnosis is often a long journey that can take years because the
condition is so unknown, and many people are incorrectly diagnosed with
fibromyalgia, irritable bowel syndrome, and chronic fatigue syndrome.
There is no specific treatment or cure for EDS and most
affected people learn how to manage living with the condition.
Physiotherapists and occupational therapists can help with
strengthening joints, avoiding injuries, managing pain,
and advice on daily activities and helpful equipment.
Counselling and therapy are also helpful for coping with
chronic pain and the complications of the condition.
Depending on the form of EDS and severity, some activities will
be minimized or avoided, like contact sports and heavy lifting.
Protective equipment might be needed for moderately straining activities,
and low risk exercise like swimming or yoga might be encouraged.
Pacing, good diet and sleep habits, and self-care
are important to maximize quality of life.
Now, if you’ve been listening to this and panicking because you can bend
your joints in a funky way, don’t jump to any conclusions right away.
Joint hypermobility is fairly common and just means some
of your joints have a larger range of motion than normal.
I don’t have any extra flexible joints myself, but what about all of you?
Do your fingers or wrists go back extra
far, or can you bend your knees backwards?
This is commonly referred to as being double-jointed and
it’s usually seen in the elbows, wrists, fingers, and knees.
Most often, hypermobility doesn’t cause any pain or
complications—besides maybe a surprised reaction when
you show off your joints to people as a party trick.
But for people who are overly flexible and experiencing
symptoms like joint pain and injuries, dislocations, tiredness,
dizziness and fainting, thin and stretchy skin, frequent
bruising, and bowel issues, this indicates a more serious issue.
It’s important to consult medical experts
quickly, before serious injuries occur.
EDS is a rare condition with several different types and a range of
severity, and each case will have unique complications and management.
In one severe case, Kaity D was only 13
when she started having dislocations.
She had to go through several unnecessary surgeries
because so little was known about EDS that doctors
didn’t have a clear guideline on how to best help her.
Kaity had one rib removed as well as
three toe knuckles and a spinal surgery.
She’s expected to have three more rib removals,
and both hips replaced, among other complications.
Now that Kaity has a diagnosis for hypermobile EDS and
arthrochalasia EDS, hopefully her path forward only gets better.
One more well-known example of EDS is Garry Turner,
a UK man who is a Guinness World Record holder.
He is the man with the world’s stretchiest skin.
In 1999, he stretched the skin on his stomach
out over 6 inches, or almost 16 centimeters.
This wasn’t painful for him, though other aspects of his EDS are.
Some celebrities have spoken out about living with EDS, including
Jameela Jamil, Lena Dunham, Devin Druid, and Cherylee Houston,
an actor who actually played a character with EDS on the
series Coronation Street.
Going back to Emilie, her complications did
not end when she finally got her diagnosis.
A year afterwards, she was involved in a car accident
when another driver fell asleep and crashed into her car.
Emilie’s ribs were dislocated, and only six months later,
this led to her chest and thoracic also dislocating.
She described it as a domino effect—after the first
rib dislocated, her health rapidly got worse every day.
Simple tasks like bending over, extending sitting, driving, lifting
things, coughing, and even breathing would result in a dislocation.
At the worst point, Emilie had to wake up every
ten minutes to put her ribs back in place.
Desperate, she researched slipping rib syndrome and once
again took charge of her own health, eventually flying
to Florida to receive treatment at a specialized clinic.
Three months later, Emilie’s health improved
drastically, and she stopped dislocating.
After this life-changing experience, she was inspired to become a
doctor to make sure others didn’t have to suffer the way she had.
In February 2022, Emilie finally opened a medical
clinic in Israel that focuses on treatment for people
with EDS and other orthopedic injuries and pain.
Suffering from rare, painful medical
conditions like EDS can be confusing and scary.
Not very long ago, so little was known about EDS that people like
Emilie probably never got an answer to their medical mystery.
If it wasn’t for that TV episode playing at the right
time, Emilie’s journey would have been even longer and more
difficult—who knows when she would have received a diagnosis?
We’re very lucky to live in a time where information
is more readily available, and people can more
quickly be connected to the information they need.
Living with EDS can be very difficult, so it’s
important to build on information that’s been discovered
so far and provide tools to manage the condition.
Emilie’s clinic is one example of a great
step forward in helping people with EDS.
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