Wednesday, August 22, 2012

Smiling Champ

Thank you for your comments and your beautiful poem.  I am so sorry for all that you have had to endure in your short life.  I admire your courage to reach out to others that are struggling and give them hope as well.  You must be an amazing person!  May God bless you each and every day and remember when you reach for Him, He will always be there.

I cannot explain why anyone would have to go through all of the hardships you have had to go through in life. But what I can say is that you have been given a heart that is able to use those experiences and bless all around you. 

There is a reason that you are still here and a I pray that God holds you in the middle of His hand for the rest of your days.  Know that there is always a purpose to all that God does.  It is not His will for anyone to be in pain, but He will make all things turn out of good for those that trust in Him.  You are a bright shining example of that promise.

God bless!

For all of you not familiar with her story, please ckick on the link enclosed in this entry.

Monday, August 6, 2012

So Proud!!

After You are Diagnosed with Ehlers-Danlos Syndrome

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.

Medical Appointments

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 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.

Emotional Support

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 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.  I know that to be true for many people, but not all. 

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 US and UK.  Check Facebook or Team Inspire for posting of meetings.

Physical Support

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 Alliance

Cincinnati Children’s Hospital~ Special Needs Directory

Feel free to contact me if you would like to learn about local support group meetings: