I Wish I Could (EDS awareness)

[Osleya]

Did you know that May is Ehlers-Danlos syndrome (EDS) awareness month?

What is EDS?
The Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.

For people with EDS physical activity can be extremely difficult, painful, and energy draining, even if it something small.

Why the Zebra?
People with the Ehlers-Danlos syndromes and hypermobile spectrum disorders (HSD) often identify themselves as zebras.

Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis.

But many people spend years pursuing a diagnosis for disorders that aren’t well known. Or aren’t expected in someone who looks normal, or is too young to have so many problems, or too old. Or even, what we might have is considered too rare for anybody to be diagnosed with it.

When you see a zebra, you know it’s a zebra—but no two zebras have identical stripes just as no two people with an Ehlers-Danlos syndrome or HSD are identical. We have different symptoms, different types, different experiences—and we are all working towards a time when a medical professional immediately recognizes someone with an Ehlers-Danlos syndrome or HSD.

Did you know a group of zebras is called a dazzle?

Why i’m doing this?
EDS is one of the most under-diagnosed illnesses. My brother suffers from EDS but we didn't find out until he was 15. We went to many doctors and almost all of them said it was nothing or it was caused from stress. I don't want any more people to have to go through that long in pain not knowing whats wrong and doctors unable to diagnose them. His EDS has caused him a lot of pain over the years and he cant even do simple things. Though I am the younger sibling I often have had to step up and care for him, making it so we often joke around and he calls me his service human. While in high school junior year he could only go for half the day and senior year, because the years prior where hard on him, he didn't even go to school. He often tells me how he feels like an old man due to his joint pain

please help me add to this linked scene and spread awareness