Popsy Clothing Cult #14 Well done Sandra you've got an actual <redacted> in the group

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Awful said:
They are real, but also it is now being given out as a shut up diagnosis.
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I wish! (Literally...) My child has POTS like symptoms, as observed on multiple sit and stand tests, and her shoulders and hips dislocate frequently. She scores 8 out of nine on the Beighton scale (assessed by hospital physio), and is also autistic. She needs crutches to move around in a stable fashion. We've been seeing multiple paediatricians for several years and don't have an official diagnosis.

Harking back to earlier in the thread - EDS and POTS are more prevalent in people with autism. And that is the prime Popsy demographic,

If people had to watch their child endure what I have watched my child endure - losing years of her childhood to being housebound and in considerable pain, they wouldn't be so dismissive of the reality of the conditions.
And this is not aimed directly at the person in the quote.
 
Nah @JuneJuneHannah, shortest month will have to go to the petitest of petites Cardigan JL a la the Game of Thrones calendar 😂
 

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Tender & Tired said:
Apparently they didn’t know the hubby had it until the son was diagnosed with it. Not sure how it was never identified before then… but that’s what she reckons
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Tbf it quite often happens with genetically inherited conditions that the parent will either be a carrier or have very low markers for the condition ie Gummy's hubby is obviously short and has slightly abnormal facial features, maybe some heart issues but not necessarily anything you would directly link to a rare syndrome. Since testing is better nowadays it's likely Gummy would know about her kid's condition from the start and then hubby would get tested since it's genetic.

I've got a friend whose daughter has 22q syndrome and not until her daughter was diagnosed did her husband find out he does. Again it showed in his face and some slight learning issues but nothing diagnostic.
 
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Peekatcho said:
Can't bring myself to look for Timydingalings post at this hour lol

*Edited because I forgot to blur the sons nameView attachment 2788499 q
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I challenge gummy to begin a post without the word So.

“Hitting the rare disease lottery” does that mean 2 chances to grift?

“Feel free to share” hmmm does she run the group? Writing “I’d love to hear if anyone else has a rare disease story below” would make more sense
 
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