naur lifer retweetledi
Hey folks, I'm reaching out to see if we might find someone to help a young woman I've been in contact with whose life if in danger due to a dire medical situation and not receiving proper care.
She has very severe MCAS, MECFS, Lyme disease, CCI, IIH and possibly other issues. For the last year she has become dangerously malnourished due to inability to swallow and keep down food (ineffective esophageal motility) and severe reactions to all foods.
She recently got a peg-j tube, but her severe MCAS reactions (difficulty breathing, difficulty keeping formula down, severe itching and burning, rashes, severe GI pain, etc) to formula mean that she still cannot get sufficient calories.
However, instead of exploring alternatives such as tpn or hypoallergenic formulas, the hospital is treating this issue as psychiatric and says she doesn't have MCAS and sending her home. She's also losing vision, having intermittent full body numbness + heaviness/weakness, brain fog, seizures, dizziness, painful eye bulging and more.
After suffering severely for so long and having multiple hospitals refuse to take her issue seriously, she's considering going home to die. Unfortunately, she does not have supportive family or friends to advocate on her behalf.
I am very severe myself and have limited ability help but I've been wracking my brains trying to figure out who might be able to help because I can't just stand by and watch her die.
She is in Tennessee and if you have any ideas if you could contact her @sadfoxqueen
Thank you so much! Also, please tag anyone who can spread this message or may have connections!
English
