Diagnosed with EDS, Now What?
By Amy L. Schulze
“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
friendly advice from those that have more experience than you do right now.
When a medical students is in school they are taught, “When you hear
the sound of hooves, think of horses not zebras.” Well we are the
Zebras. We look like many, many other common and not so common
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
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