Where to Go?
I have been diagnosed with Ehlers Danlos syndrome, since my Sister died in 1996, and with it ankylosing spondylitis, among many, many other medical issues.
In the beginning, we saw a genetic Dr. at the University Hospital. They kept track of everything.
However, when the powers that be made it ok for any doctor to diagnose and treat...well, let’s just say we’ve fallen way short on proper help.
Every ailment, bruise, and new disease is grouped into either EDS, ankylosis, or just age and many Dr.s don’t believe the double diagnosis and they think I’m full of it…(another problem).
I’m so tired of not being heard and understood!
Advice…if you find a good Dr, don’t let them go!
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