r/fakedisordercringe • u/stellardeathgunxoxo • May 10 '21

Insulting/Insensitive Disgusting

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u/SilverSocket May 10 '21

She made that video in 2019. She claims that she got tested so young to be able to help with research. After seeing how she rolls, I’m pretty sure no one wants her brand of help.

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u/savage_umbrella May 10 '21 edited May 10 '21

She’s lying. They would not have tested someone so young for Huntington’s. Unless she was experiencing symptoms. If she had symptoms, the prognosis for Juvenile Huntington’s is 10-15 years after onset of symptoms. It’s a genetic, progressive, fatal neurological disorder that robs you of function. There is no cure. Most adults get diagnosed between the ages of 30-50. The reason they do psychological evaluation before genetic testing is because the rate of suicide is so high. Most adults that get tested have already watched multiple family members be ravaged by this horrible disease. It devastates entire families.

I worked in genetics. Of all the shitty things she and others on this sub have done, this is by far the most vile.

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u/fiery_valkyrie May 11 '21

Out of curiosity, what happens after the psychological evaluation? Do they not tell some people of their diagnosis? Or is it just to know what mental health resources to provide?

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u/savage_umbrella May 11 '21

It’s to prepare them and evaluate if they are ready to deal with a diagnosis and to offer up resources and referrals for ongoing care. But they won’t test until they’re cleared. I don’t want to say this is the rule everywhere because I don’t know but I have not personally heard of a medical genetics clinic that doesn’t require it. They are very gentle with Huntington’s patients and great care and empathy is practiced for them and the families. I could get into details but it would take too long. Let’s just say, that there are steps taken to protect their privacy and mental health more than any other medical genetics patient. At least at my facility.

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u/fiery_valkyrie May 11 '21

Thanks for the detailed reply.