Giuc0

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  • #1
Hello,

in a UID thread, a few elements scream "LOOKS LIKE UID HAD A RARE DISEASE!"

I wanted to post a vlog from a patient suffering from complications stemming to the rare disease she has been dx with, especially the dental ones stemming from the digestive complications.
Of course, not all patients with the same rare disease will have the exact same issue!

But I want to highlight the point that in the UID's descriptions, two elements seemingly unimportant can help narrow the research.
By posting the specific vlog I am thinking about, I want to point out a strongly possible path IMO for helping to find the right match.

The vlogger is very vocal about her condition and wants to spread awareness about specific details often overlooked linked to her condition.

Also, since the UID was found in the '70s, the MP reports we can find use more likely than not a different terminology to describe the medical condition.

@CarlK90245 is such a link in line with TOS?

Thank you
 

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