What do you make of that one paper written about her? Was it even about her, anyway?
Edit:
link to paper
I've never seen it tbh and I'm not any sort of medfag so like, a lot of this might as well be chinese to me. But I can at least check it against her history to try to see if it's really her.
Cheyanne was 19 in 2016 (DOB 11 January 1997), so that matches.
Like the girl in the article, Cheyanne was hospitalized in Feb 2016 although these doctors are in Cleveland and she was hospitalized in Florida. I think the article is saying the initial hospitalization happened in Cleveland, but like I said, I'm not particularly good at reading these so I just might be misreading and we'll give it the benefit of the doubt.
The hospital in Florida started Cheyanne on TPN and she developed refeeding syndrome, but she never mentions having any scopes or having weird results on them at the time. On her blog she was just talking about a colonoscopy years prior and complaining that doctors didn't see how sick she was because there was no ulceration
at that time but no talk of a current colonoscopy that showed spooky things. She claimed this hospitalization was from mast cell making her react to food. Doesn't mean that all didn't happen, but given that she was so excited to talk about anything showing up on any test, I don't know that she just wouldn't mention all of this proof she was sick showing up on scopes.
The patient in the article also got weekly IVIG. So I went to my notes and can find exactly one time Cheyanne mentioned IVIG.
Here's the post about that, from July 2015, almost a year before the hospitalization. It was discussed but her doctors wanted to call an MCAS specialist first before they tried her on it. She never updated to say they did, never showed it off, and a few days later was excitedly talking about getting on continuous diphenhydramine infusion after talking to the mast cell specialist. . . it's not a smoking gun but she loved showing off that she got rare n' shiny treatments (including the CDI). IVIG is one of the rarest and shiniest of them all because it's a scarce expensive blood product that takes somewhere around 15,000 plasma donations to make a single dose. It just doesn't sound like the kind of thing she'd just never mention getting. But maybe. She also never mentioned having CVID or IBD, and never mentioned being on Infliximab (Remicade) which is a treatment for IBD.
She claimed she was "misdiagnosed" with IBS one time but it was just doctors not digging deep enough to figure out what was really wrong (which she then went on to explain was MCAS). (
archive)
She did very recently (less than a week ago) talk about trialing IVIG which sounds like she'd never had it before and wasn't sure what to expect. But it might just be that they don't know how shell react post-op with everything else going on.
The article's patient was seen in Cleveland Clinic in late February or early March 2016 right after that hospitalization.
Cheyanne did not go to Cleveland after that. She aged out of pediatric care in Florida and started preparations to move up to South Carolina on the advice of her "team", so she could be a patient of Dr. Afrin. She didn't move until April, but she also didn't mention going to Cleveland between being discharged in Florida and the move north.
She did go to Minnesota shortly after moving to see Dr. Afrin in person, but again, no mention of being hospitalized in Cleveland when she was there.
From her blog, just a normal appointment with the doctor in Minnesota. No fun hospital drama.
She does mention going to Ohio one time in her blog, but she was "barely a teenager." She sees Dr. Tom and Gisela Chelimsky who were based out of a private practice in Strongsville, not the famous Cleveland Clinic, and she was there just for a dysautonomia testing. They diagnosed her with neurogenic bladder and fibro. Sounds like they were a diagnosis mill to me.
Article said she had a bone marrow biopsy looking for HLH in 2016 but it was negative. Cheyanne did mention having prior bone marrow biopsy on her blog in January 2017 but it was to look for systemic mastocytosis and when it turned up negative she said the doctors "flubbed it up". (
Archive link) Cheyanne didn't mention HLH or even knowing a disease called HLH existed until September 2019 and she never mentioned testing for Mediterranean fever.
However the journal article was published in
early 2019. So yeah okay we can writhe around a little and say maybe it is about her and she did not have HLH in 2016, but did have it late 2019 after fucking her liver with TPN.
fine.
This patient also had a CFI mutation of uncertain significance.
Of all the genetic mutations Cheyanne mentioned, a CFI mutation was not one. She claimed TTC7A, MTHFR, FLNC, and KCNQ1 mutations, so it stands to reason she would have also mentioned this one. In the "where is my hope?" blog above, she mentions that she had two gene mutations found on an early test but was told at the time that they were "likely not disease causing". So it's not like she wouldn't mention them just because she was told they weren't doing anything bad.
Article patient had to go through prophylactic treatment for
Pneumocystis jirovecii .
Cheyanne did have
Pneumocystis jirovecii colonize her lungs but it was in February 2020 after the article was published and she got it while she was in Cincinnati Childrens. She remained on prophylaxis for it but it was Pentamidine, not trimethoprim-sulfamethoxazole.
TL;DR I do not believe this is about her.
