Diagnosed with EDS, Now What?
By Amy L. Schulze
This is a set of advice that was compiled by a group of patients. It is meant
to help with issues other than the formal medical advice you will receive from
various doctors and therapists. Do not take this advice for something other than
friendly advice from those that have more experience than you do right now.
When a medical students is in school they are taught, “When you hear
the sound of hooves, think of horses not zebras.” Well we are the
Zebras. We look like many, many other common and not so common
At the beginning you might feel that the medical appointments might never end.
If you are an adult and recently diagnosed, you might feel many different
emotions such as relief that you are not crazy! Something is wrong despite what
other doctors might have said to you for years.
It is important to let all of your doctors know about the diagnosis, be prepared
that some of them might not know what EDS is and give you incorrect
Some doctors do not like to be “educated” by their patients. If you are having a
difficult time dealing with a doctor’s unwillingness to accept and learn about this
new diagnosis, it might be time to find a new doctor.
If they are open, leading them to websites such as www.cincinnatichildrens.org
where they can look up EDS written by Dr. Tinkle might help.
You also might consider finding doctors that are willing to admit that they don’t
know “everything” but are willing to learn.
One of the realizations that will come after some time is that there is no “magic”
solution. No matter how many doctors your see, or how hard you try, none of
them will be able to take away all of the symptoms of EDS.
Since many of us “Zebras” may already have a strained relationship with the
medical community, it might take some time to come to grips with the fact that
yes you finally have an answer to what is wrong with you, but unfortunately,
there is no cure. Management of symptoms is the key.
Emotional Side of the Diagnosis
One of the difficult aspects of this syndrome and a late diagnosis is that friends
and relatives around you might not have realized the amount of pain and
discomfort you have endured prior to your diagnosis, therefore, they might find it
difficult to understand why you are running to the doctor all of a sudden.
EDS can be difficult to explain and understand so give them and yourself time to
digest this information.
While it is tempting to spend hours looking up EDS on the computer and do lots
of research, try to bear one thing in mind-you are the same person you were
prior to diagnosis. You are not broken. This is just the way your genes express
It also might be tempting to ignore or wish this diagnosis away.
Denial is more than a river in Egypt.
Don’t be surprised if you or your loved ones want to stay in this state for a
while. “But you have been fine all of your life! Why are you sick now?” Or “But
you don’t look sick!”
Many people have said that getting a life long diagnosis causes people to go
through a grieving process. We grieve over the future we thought we would
have. We grieve over the fact that there is no cure. We grieve over the fact
that we will have to deal with medical issues for the rest of our lives.
There are groups and websites that you can join to help you along the way.
Facebook is one resource that many Zebras have turned to for daily contact and
friendship of others that understand EDS. You can look up some of them, but
here is a very short list:
*Zebras for Life”
*Ehlers Danlos Awareness”
*EDS Fight for a Cure”
All of the above groups are closed. You will need to ask to join. If you have
trouble joining a group, please contact me at firstname.lastname@example.org
Ehlers-Danlos National Foundation is a group you may join that has many
resources and guides to help. Once you join you can become part of “Inspire”
an on line group.
There is a local support group called the Cincy Zebras. We meet about every
three months. Meetings are open to all that are affected by EDS. It has been
very healing to me to meet others that are going through the same struggle.
Other groups in other cities are listed on the www.edsawareness.com web site.
One key for survival during this beginning phase is to realize that you are not
Not everyone in your life will take this diagnosis with open arms. Be patient with
yourself and with them.
One of the most difficult things for some of us to grasp is that we might need
some help from time to time. You might be very used to “getting by” and dealing
with pain by ignoring it.
There is a legitimate reason for your pain and you might consider paying
attention to your body.
There are many ways to one thing, for instance, laundry. You might consider
using a reaching tool to get the clothes out of the washer or dryer.
A different idea might be using a basket on wheels to carry the clothes to the
Better yet a way to do laundry might be getting a machine that washes and dries
the clothes all in one thus eliminating the need to deal with wet clothes.
Occupational therapists can be a great resource to help think of ways to help
protect your joints.
Consider hiring an OT to come to your home to do an evaluation of the
environment. There can be several simple, low cost things you can change in
the house that will save your energy and keep you from injury.
One such OT that is familiar with EDS is Marnie Renda. You can contact her by
her web site at www.rebuildindependence.com
There is a fine line between bracing and keeping strong. You might not have
realized that all of these years you have been dislocating or subluxing joints.
For some people with EDS, it actually might feel good to do so. Try not to
hyper-extend any of your joints. Over hyper-extension can lead to a lot of pain
There are many types of braces that can keep the joints in place and a physical
therapist or OT can assist with specific recommendations.
Dr. Tinkle’s books are a good source to help understand concepts like a “pain
Basically when we do too much and suffer the next day or the day after with
Center for Ehlers Danlos Syndrome Alliance website: www.cedsa.org
Issues and Management of Joint Hypermobility: A Guide for
the Ehlers-Danlos Syndrome Hypermobility Type and the
Hypermobility Syndrome by Dr Brad Tinkle
Joint Hypermobility Handbook- A Guide for the Issues &
Management of Ehlers-Danlos Syndrome Hypermobility Type
and the Hypermobility Syndrome by Dr Brad Tinkle
A Guide to Living with Hypermobility Syndrome: Bending
Without Breaking by Isobel Knight
The problem with books with research is that they are outdated by the
time of publication. You really need to do your homework on line to
find current research.
The horrible part about research and EDS is that we are considered
an “Orphan Disease” meaning there is little funding for research.
Most doctors like to base their treatment plan for patients on research
and documentation. They are not going to find a ton of information
out there about EDS. The group is too small. It is going to take trial
and error and bold doctors to write up their experiences in order for
there to be adequate information about the basics of EDS.
The other problem with us Zebras is that no two are identical.
We all express this problem with different symptoms. When
you have treated one Zebra, you have treated one Zebra.