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pigsrock
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17 Feb 2020, 12:45 am

Any other aspirations with Ehlers Danlos Syndrome


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I am a 26 year old Launch code Graduate with level 1 autism Ehlers Danlos syndrome and trisomy 12p, I like cubing, math, genetics, JavaScript, Pigs, my favorite medical procedure is a thoracotomy.


Dial1194
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17 Feb 2020, 7:30 am

Not one myself, but I've met a few. It does seem to be somewhat commonly co-morbid.



Noca
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27 Feb 2020, 1:51 pm

I don't have EDS but I have a rare bone and neurological disease called MHE(Multiple Hereditary Exostoses) which is found in 1 in 50,000 people, so I guess that makes me a Zebra.



Bravo5150
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05 Mar 2020, 6:10 pm

Is the op asking about the one disorder specified or referring to zebras in general?



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06 Mar 2020, 8:54 am

Bravo5150 wrote:
Is the op asking about the one disorder specified or referring to zebras in general?
One specific genetic disorder. Google it.


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Bravo5150
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06 Mar 2020, 9:13 am

Fnord wrote:
Bravo5150 wrote:
Is the op asking about the one disorder specified or referring to zebras in general?
One specific genetic disorder. Google it.


I understand the term "zebra" to be applied to any and all rare disorders. That is why I asked for clarification from the op on the intended use of the word in contrast to specifying on the word.



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06 Mar 2020, 10:33 am

In the OP's context, a "Zebra" is an obscure illness, disease or condition affecting a comparatively small number of people, but with symptoms somewhat similar to one or more different and more common illnesses. It is so named because these diseases/conditions are sometimes misdiagnosed by well-meaning (but often inexperienced) doctors when something far more common is actually the cause. Medical students are told "remember, if you hear hoof beats, think horses, not zebras".

Doctor 1: "I think this patient may have Castleman's disease."
Doctor 2: "Castleman's disease is a zebra, there are far more likely causes of his fever and weight loss."

The fictional characters of the TV show "House" were known for "chasing zebras".


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Bravo5150
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06 Mar 2020, 11:34 am

Fnord wrote:
In the OP's context, a "Zebra" is an obscure illness, disease or condition affecting a comparatively small number of people, but with symptoms somewhat similar to one or more different and more common illnesses. It is so named because these diseases/conditions are sometimes misdiagnosed by well-meaning (but often inexperienced) doctors when something far more common is actually the cause. Medical students are told "remember, if you hear hoof beats, think horses, not zebras".

Doctor 1: "I think this patient may have Castleman's disease."
Doctor 2: "Castleman's disease is a zebra, there are far more likely causes of his fever and weight loss."

The fictional characters of the TV show "House" were known for "chasing zebras".


The house comparison makes more sense as they had several seasons of different zebras. I was confused because the op asked if anyone had one specific rare disorder instead of asking about any and all rare conditions.



blooiejagwa
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06 Mar 2020, 11:38 am

Rose Guedes now Scarlit Rose Ashcraft. She has CDs about her Autism n EDS directly

V good lyrics n catchy tunes.

V good writer too (v insightful, thoughtful blogs)
She has a new music release coming out.

It would be good if people from Wp support her by purchasing her music.


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