May is Ehlers Danlos Syndrome Awareness Month

Ehlers Danlos Syndrome is the ugly, nasty disorder that gives my life pain.  It has taken away the talents and training that I spent my life pursuing.  It is progressively making every part of my body fall apart.  How?  Let me tell you about Ehlers Danlos Syndrome.

Ehlers Danlos Syndrome is a genetic disorder.  I was born with it.  It effects every one of my cells.  It means that my connective tissue is faulty and weak.  Connective tissue is all through my body and when it is weak, the body is weak.  My  joints are lax.  My shoulders are unstable and come loose in the joints.

I was born with unstable hips and was put in braces to stabilize them.  I was born with pigeon toes and wore braces for those.  I wore corrective shoes for pigeon toes and flat feet.  I also had scoliosis, severe kyphosis curve and severe lordosis curve.  These are all signs of Ehlers Danlos Syndrome.  Unfortunately, in the 1960's and 70's, the doctors didn't know about EDS.

When the doctors discovered my scoliosis at age 15, I was put in a Milwaukee Brace for two years.  This extremely painful brace caused wounds, dizziness and severe weight-loss.  The brace did not work, because I was told that it didn't.  The reason was probably because of EDS and my joints slipping back to where they were.  But the doctors in the late 70's didn't know about EDS.

One of my finger ring splints

I continued to suffer with back pain, but it became my normal and I tried to put it out of my mind.  If you've read my blog, you know what followed.  The years brought more pain, more subluxations and then dislocations of joints.  I was finally diagnosed with Ehlers Danlos Syndrome at age 51.  This is my reality.  All of my major diagnosis' came after the age of 50: EDS, MCAS, Chronic Migraines, Osteoarthritis, Psoriasis, and Seizures.

To learn more about Ehlers Danlos Syndrome, please visit Ehlers Danlos Society.


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