EDS awareness (add a zebra)

[Osleya]

May is EDS awareness month. Can we fill this scene by the end of the month?

just ask to be added
Please help me and add as many zebras as you want

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.

The Ehlers-Danlos syndromes (EDS) are currently classified into thirteen subtypes. Each EDS subtype has a set of clinical criteria that help guide diagnosis; a patient’s physical signs and symptoms will be matched up to the major and minor criteria to identify the subtype that is the most complete fit. There is substantial symptom overlap between the EDS subtypes and the other connective tissue disorders including hypermobility spectrum disorders, as well as a lot of variability, so a definitive diagnosis for all the EDS subtypes when the gene mutation is known—all but hypermobile EDS (hEDS)—also calls for confirmation by testing to identify the responsible variant for the gene affected in each subtype.

For those who meet the minimal clinical requirements for an EDS subtype—but who have no access to molecular confirmation; or whose genetic testing shows one (or more) gene variants of uncertain significance in the genes identified for one of the EDS subtypes; or in whom no causative variants are identified in any of the EDS-subtype-specific genes—a “provisional clinical diagnosis” of an EDS subtype can be made. These patients should be followed clinically, but alternative diagnoses and expanded molecular testing should be considered.

Please remember that an individual’s experience with an EDS is their own, and may not necessarily be the same as another person’s experience. Diagnostic criteria are meant solely to distinguish an EDS from other connective tissue disorders, and there are many more possible symptoms for each EDS than there are criteria.


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 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 they might have is considered too rare for anybody to be diagnosed with it.

So the zebra became our symbol to mean, “Sometimes when you hear hoofbeats, it really is a zebra.” Ehlers-Danlos syndromes are unexpected because they’re rare. Hypermobile spectrum disorders are common, but are unexpected because they remain misdiagnosed or under-diagnosed.

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. People 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.

A group of zebras is called a dazzle.

We are a community of individual zebras, we are stronger together, and we dazzle.

Why I made 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 tell me how he feel like an old man due to his joint pain

[SpoonfulOfSuga]

can i be added

[Osleya]

added

[Osleya]

Bump. Please help I want to fill the screen and show my brother

[Skeletals]

Add a zebra for me, EDS and Chiari

[Osleya]

You can now edit and add any Zebras you have

[Minato.]

Could I be added?^^
I really love the reason you're doing it, and it's awesome that you're spreading the word

[Osleya]

Added

[heathersmoo]

add me please

[camobeaniequeen06]

May I be added?