Hyper Mobility Type As an Adult
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 another resource you might consider as you begin to deal with EDS.
The term Zebra comes from the saying that is taught to medical students about diagnosing patients: “When you hear the sound of hooves, think of horses, not zebras.” Also, no two zebras have the same stripes. Each person with EDS can present with different symptoms and pain.
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 information. Some doctors do not like to be “educated” by their patients but if they are open, leading them to 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 doctor will be able to make everything better. 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.
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 themselves.
It also might be tempting to ignore or wish this diagnosis away. Denial is more than a river in
. 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. I know that to be true for many
people, but not all. Egypt
It is import ant to realize that you are not alone. 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
EDNF (Ehlers-Danlos National Foundation) is a group you may join that has many resources and guides to help as well. The group is called “Team Inspire”
There are local support groups forming in several areas of the
and . Check Facebook or Team Inspire for posting of
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 machines. 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.
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. Now it is time to protect those joints from damage that will manifest itself later. There are many types of braces that can keep the joints in place and a physical therapist or OT can assist with specific recommendations. Hiring an OT to come to your house can also be helpful to find ways to change the physical environment to protect your joints or conserve your energy.
Joint Hypermobility Handbook- A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome by Dr Brad Tinkle
Issues and Management of Joint Hypermobility: A Guide for the Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome by Dr Brad Tinkle
Hypermobility, Fibromyalgia and Chronic Pain Alan J Hakim MB FRCP (Editor), Rosemary J. Keer MSc MCSP MACP (Editor), Rodney Grahame CBE MD FRCP FACP (Editor)
Ehlers Danlos National Foundation
EDS Cares Network
Center for Ehlers Danlos Syndrome
Cincinnati Children’s Hospital~ Special Needs Directory
Feel free to contact me if you would like to learn about local support group meetings: