I just want to be well for my son. A Mother’s Story
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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Tags: CCI, CFS, Chiari, Cranial Cervical Instability, Ehlers Danlos Syndrome, Gastroparesis, GERD, Helping Your Unusual Child, Hypermobility, Parenting with Chronic Illness, POTS
Real Life Stories | TinaMiller | 
May 26, 2016 11:46 am | 
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Rantings of An EDS Mom
I just finished our company call for my direct sales company and they announced our trip incentives.
It all sounds wonderful and I would love to go.
Who doesn’t want 4 days and 4 nights paid vacation?
No house to clean, no doctors to call, no doors to answer, no meals to cook, no dishes to do.
And then I remember I have E.D.S. (Ehlers Danlos Syndrome)
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How do you prepare for an IEP or 504?
You are your child biggest advocate and you need to approach your school prepared.
Some schools, like ours, are great and will work with you.
Some schools, well…let’s just say they may be a bit more challenging.
This is where being prepared comes in. If you are just learning about your child’s challenges just imagine how overwhelmed and lost the school staff may feel.
So…. get organized, get educated and get prepared!
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Helping Your EDS Child (Part 1-Resources)
KNOWLEDGE IS POWER
First of all, this series is to help all parents with a physically challenged child. EDS is simply the challenge we are the most familiar with and I try not to offer advice I know nothing about… I will leave that to guest posts and reference groups.
In this series, we want to share things you can do at home and school to help your child succeed.
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