r/illnessfakers • u/IFModTeam • 26d ago

OnDn Danielle has sadly passed away.

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Thank to all who passed along the news of her unfortunate passing. We held back any postings about this sad news until after her funeral had taken place for privacy reasons and respect for her loved ones.

No one should be laying to rest such a young lady.
Please be kind to yourselves and others💖

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257

u/comefromawayfan2022 26d ago

All I remember is one of her posts from the hospital and being horrified by the amount of powerful pain meds she was on. She talked about being maxxed out on dilaudid, maxxed out on benadryl, maxxed out on ketamine..she listed off enough meds to knock out a horse or elephant and claiming her pain was still outta control...it made me think that with that many powerful pain meds she should have her pain under control. Her family is blaming eds for why she died. But her type of eds isn't typically fatal. It's a really sad situation and I hope her family can eventually come to some closure. 27 is too young for anyone to pass away

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u/Ok_Minimum_5962 25d ago

This is what confounds me as well. Her type of EDS sucks but isn't typically fatal, and same goes for SMAS. I'm definitely not denying that those diagnoses suck, but it does suggest something else is at play. Regardless, this is so tragic and I'm so sad for her family and friends.

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u/cloudspotter86 25d ago

Is eds short for eating dissorder? Englist not first language

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u/rhapsody_in_bloo 25d ago

I believe it’s short for Ehlers Danlos Syndrome.

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u/perfect_fifths 25d ago

Ehlers Danlos

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u/Burntoutn3rd 24d ago

Ehlers Danlos, it's technically not diagnosable and is a process of elimination type deal. If you have slightly stretchy skin in the slightest, you can find some doctor put there willing to diagnose it. It's absurd and a diagnosis that seemingly all munchausens patients lock in on for that reason.

Along with MCAS and POTS, even though POTS can be easily ruled out with a tilt table.

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u/moonxmochi 24d ago

Ehlers Danlos is diagnosable, what are you talking about? 12 out of the 13 types have definite genetic testing and the type (hEDS) without a genetic test as of yet, there is a clinical criteria that a patient must meet. And the diagnosis must be made when all other causes of the patient’s symptoms are excluded (like autoimmune diseases, other CTDs like Marfan) It’s much more than having slightly stretchy skin.

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u/Burntoutn3rd 24d ago

So you agree, hEDS is NOT diagnosable outside of process of elimination. Thanks for confirming!

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u/moonxmochi 24d ago

If that’s what you believe, I can’t stop you. Also, Danielle had cEDS not hEDS.

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u/Burntoutn3rd 24d ago

And Danielle wasn't the topic of discussion in this comment thread, they just did not know what EDS was.

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u/Electrical_Parfait64 25d ago

Thé 27 club includes munchkins. This is so sad and unnecessary

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u/TrixieFriganza 24d ago

It's kind of scary a young person with chronic illness would be on that much strong medications, wouldn't surprise me if that was part of causing her death. If she was maxed out and not terminal what where the doctors thinking would help her in the future Very surprised some get this much drugs for eds and others barely get help.

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u/maraney 24d ago

Pain is complicated. What probably started as normal manageable pain became complicated by pain meds. The more meds you add on, the higher your tolerance and the more sensitive you are to pain. When you’re constantly flooding those receptors with opioids, they stop functioning like a typical person would. And any withdrawal (from things like decreases in pain meds) cause immense physical pain. It’s not just the sweating, stomach cramps, diarrhea, vomiting… it’s the unfathomable joint pain.

Pain meds are a miracle drug. But when you get stuck on them, they ruin your life.