EDSFactsEnglish
-
The Prayer of An EDS/Chiari/Comorbid Patient
As we lift up a warrior fighting EDS, Chiari, and/or Comorbids,We are believing You for: Knowledgeable doctors/surgeonsWith hearts for the patients that are trusting themEars to hear themAnd a willingness to unlearn and relearn CSF leaks to sealCranial masses to disappearNarrowed venous structures to widenAnd cranial pressures restored to normal Sticky…
-
Palliative Care: An Essential for EDS & Chiari Families
When I was first diagnosed with Chiari Malformation, I believed everything that my neurosurgeon told me. I was originally diagnosed with a Chiari 1 Malformation. I was told that it was congenital and due to my mother either using drugs or not getting proper prenatal care, which was crushing to hear, but not all that…