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EDS Diagnostic Explanation

By

Maggie Buckley

Hi. For those who don't know me, my name is Maggie Buckley and I have
Hypermobility Type EDS. I live in California, am married, no children,
formerly worked as a Business Manager & Controller for a Photo Lab. My
training is in Social Work, Business and Accounting - no formal medical
training. I was diagnosed with EDS when I was 13 years old by a doctor who
had it - merely coincidence that he was the Orthopedist on call when I went
to the ER with some dislocations. Thus, for 25 years I have been studying
EDS and have done what I can to stay current with what is going on as far as
EDS research.
Recent information posted to the list about EDS diagnostic methods has
likely been kind of confusing for some of the newbies. So, try this
explanation on for size.
Currently, there are not any DNA tests or blood tests available for EDS
diagnostics. These types of tests are in the early research phases and have
not been found to be reliably accurate compared to the clinical presentation
of symptoms. Researchers believe (and I hope) that these test will be
available for Classical EDS within the next five years. The tests for
Hypermobility type EDS are a couple of years beyond that.

The skin biopsy will confirm or rule out the Vascular type, but it is not
the sole (or gold standard) method of diagnosing this type.

The symptoms of Kyphoscoliosis, Arthrochalasia, and Dermatosparaxis types of
EDS are so profound that these types of EDS are usually diagnosed in early
childhood if not infancy. A urine test is available to confirm or rule out
the Kyphoscoliosis type. Skin biopsies are used to confirm or rule out the
Arthrochalasia and Dermatosparaxis types of EDS.

Diagnosing EDS and differentiating between types is not a precise science.
The doctor doing the evaluation has to look at all of your symptoms and
compare them to the major and minor diagnostic criteria of the different EDS
types as well as other diseases and disorders. Bear with me here and I will
try to explain it in simple terms. (For those of you familiar with it, here
comes the "poker chip analogy.")

First of all, keep in mind that EDS is a "Syndrome" or a group of disorders
that share a core group of symptoms. The core group of symptoms of EDS
include joint hypermobility, skin hyperextensibility, vessel fragility, and
organ fragility. Each of us with a diagnosis of EDS displays these symptoms
to some degree of another with a range of severity. Keep an open mind here.
I can hear some of you saying "I don't have loose joints," or
"hyperextensible skin" or "fragile vessels or organs." Trust me, most of us
are unaware of the subtle differences between "normal" range of motion in
joints and "hypermobility" in joints. It is part of the learning process we
go through as we accept the diagnosis and build up our armory of coping
mechanisms.

Imagine if you will that the doctor has 7 different colors of poker chips in
two different sizes. The different colors represent the 6 different types of
EDS and one "non-EDS" category. The doctor will pore through your medical
history, family history, and clinical records and compare that information
with the major diagnostic criteria (large poker chips) and minor diagnostic
criteria (small poker chips) as presented in the 1997 Ville Franche
Nosology. (The most recent Nosology, or description of EDS.)

The point where most people get confused is that there is not a clearly
drawn heavy black line of the types. In fact some symptoms appear in more
than one type of EDS. So, while the doctor will give you a large green chip
for hypermobility of the fingers to represent it as a major of the
hypermobility Type of EDS, you will also be given a small blue chip for this
symptom as a minor diagnostic criteria of the vascular type, and a large red
chip as a major diagnostic criteria of the classical type. Similarly, for
easy bruising, you will get a small red, a small green, and a large blue.
Since we have a shared set of core symptoms (think "Syndrome") we will all
have symptoms of more than one type of EDS. Thus, we will each receive poker
chips of more than one color.

The doctor must laboriously go through all of the criteria and the details
of your medical records doling out these poker chips. At the end of the
process the poker chips are tallied by quantity and/or weight per color. The
pile that is largest is the diagnostic "label" that you are given as far as
which type of EDS you have. NOBODY with a diagnosis of EDS fits neatly into
a single Type's description. Yet, everybody with a particular type of EDS
has a distinct type of EDS distinguished from the other types. There is no
such thing as having more than one type or "overlapping" types or one type
with an "overlay" of another type. When a doctor uses the words "overlap" or
"overlay" in describing an EDS diagnosis they are simply trying to
communicate the "Syndrome" characteristic of EDS.
It is possible to have Classical EDS and not have widened atrophic scars,
for example. It is also possible to have Hypermobility EDS and to have
widened atrophic scars, pseudotumors, organ ruptures, recessive gums, and/or
muscle hypotonia.

With the way that EDS research has gone for the last 100 years and how it is
headed, I believe that we will see more accurate diagnostic criteria which
leads to some types being "spun off" as distinct disorders of their own and
other types being combined into a single type. Keep in mind that we also
share many symptoms that are considered to be major or minor diagnostic
criteria for Marfan Syndrome, Lupus, Scleroderma, Diabetes, Osteogenesis
Imperfecta, and lots of other even more rare things.

So, after all that there are two questions that are most often raised:

How can the doctors treat me if they don't know what type I have?

Each EDS affected individual needs to have an individualized treatment
program developed which addresses the severity of their particular symptoms.
For example, a responsible physician will consider a diagnosis of any type
of EDS as enough of a risk to require extra precautions in surgery for any
eventuality of rupture or tissue fragility. Yet that approach will be
tempered by a conservative treatment approach that seeks to do no further
damage or harm.
Is it absolutely necessary to pursue a diagnosis by type?

As humans we all seek to classify and categorize everything in our lives in
order to understand it. Typing of EDS is a personal choice, it is not
mandatory. Typing of EDS can affect your insurability status both favourably
or negatively. All of the ramifications of the decision should be
considered. Will typing save your life? Maybe. Will typing define a
treatment plan more clearly for you? Maybe. Will it change what is in your
heart or what you are passionate about? Most likely not. Will it change who
you are? Only if you choose to change as a result of getting a type or not
getting a type.