Posts tagged: Gastroparesis

I Just Want To Be Well For My Son-A Mother’s Story

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I just want to be well for my son. A Mother’s Story

I just want to be well for my son.

 

I don’t even know what healthy is!

But my son needs a strong and healthy mom.

I’m a 27 year old disabled mom with a rare syndrome called Ehlers Danlos Syndrome type 3- Hypermobility.  It’s a multi-systemic disorder, meaning it effects, in severe cases like mine, almost every single body system.  It’s caused by a defect(s) in connective tissue.  Collagen is mainly effected, which the body contains about 85% of!

I remember the pain started around the age of 7.  It was nerve pain from carpal tunnel and tarsal tunnel syndrome which was the worst!  I was told I was being a baby about it and that it was just growing pains (I am quite short, only 4″11.5″.”)  It was joint pain daily as well, with some muscle pain.

I also had panic attacks from all the pain, it was so overwhelming, I couldn’t sleep and got gastrointestinal migraines.

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40 Years to Zebra

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In honor of EDS awareness month, I wanted to share my EDS story.

40 Years to Zebra Cindy B's Story of Diagnosis

40 Years to Zebra

It actually starts years, well decades, before I even knew I had EDS or what that word even was.

I have been sick since birth.

I was able to find records that show my hips popping out at 6 months and all sorts of notes about checking left arm, right leg, etc.

Around that time I also started having other issues but no one connected that to my hips.

When I was 5, I had my first surgery for a hernia that I either gave myself or it just came up?

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