23 Things You May Not Know About My Ehlers-Danlos Syndrome | oneedsvoice

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23 Things You May Not Know About My Ehlers-Danlos Syndrome

key information

source: The Mighty

year: 2016

authors: Murray Meetze

summary/abstract:

When the media features Ehlers-Danlos syndrome (EDS), the focus is usually on those of us who dislocate multiple times a day, the chronic pain, those who can contort their bodies into extreme positions, and sometimes extremely stretchy skin. EDS, a genetic connective tissue disorder, is very under-recognized, even by the medical community, as most doctors, when they have heard of EDS, are only familiar with the well-emphasized symptoms. The lack of emphasis on the other signs means that those of us who present more subtly may struggle immensely in finding answers. Some of us, like me, even know our diagnoses going into our appointments and yet still struggle to find a doctor willing to learn and listen long enough to provide us with the “official” medical confirmation. Don’t get me wrong, we all struggle. From the obvious to the subtle, to live with EDS is to suffer, but even a small amount of recognition and a slight increase in awareness of our disease could go a long way towards improving all our lives.

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