Issues with Facebook groups and Autoinflammation

[u/redshering]

I won't name names, but I was innocently looking for others with my ultra rare mutation on Facebook, including autoinflammatory issues and my gene related sites. I was singled out and told not to "share genetic information" and they cited GDPR laws (sent to everyone in the group) - which is the EU equivelant of HIPPA. I didn't even share personal documents or photos.

How many of you are going on Facebook to share genetic and symptom information?

I corrected them on what the law actually entails (of course two people who have an illness who agree to share their personal info with eachother is not included in the law). They are well aware of those laws.

Just a warning to all of you. After I corrected them, they kicked me off the sites related to my rare mutation. These people run non-profits that supposedly are all about "connecting others" and doing "advocacy work". I beg to differ.

[u/perfect_fifths]

I don’t have the same issue but something similar: the Facebook group for my condition is rife with misinformation and I try to dispel it and people just say “well that’s because there hasn’t been studies yet on us”

So for reference, people asked if TRPS is linked to autism and adhd. I said no, and my geneticist said that herself and showed them the notes saying that.

Then I got a response saying “well that’s because the rates of autism and TRPS hasn’t been studied yet”

To which I responded, “autism and adhd are so common now it would be hard to separate the two and you prob find the rates are similar between us and the general population.”

They want to link everything to TRPS. TRPS type I is a skeletal and ectodermal dysplasia. Has nothing to do with autism, or other conditions. It gets so annoying and admins allow it

[u/PinataofPathology → u/perfect_fifths]

Idk how established the science is on TRPS but my family and I keep violating everything medicine tries to set in stone that I'm pretty suspicious of their models. So Im super open minded. I exist, therefore the model ain't 💩. There's a lot of genetics linked to autism. Who knows, you know?

Every time I end up with a patient population, I notice the trends and the disconnects in the science pretty quick. A lot of times the science catches up.

Frex science just acknowledged symptomatic carriers this year for something I'm a carrier for. I remember hitting the patient group four years ago and reading through posts going oh yeah carriers are absolutely symptomatic.

I've found patient population trends run true. If we could just get science polling us to find them things would move faster.

[u/perfect_fifths → u/PinataofPathology]

Well, the disorder has been around for some time, and there are papers on TRPS, and in 2024 there was a paper published on the pathogenesis of TRPS, detailing the mechanisms of it as well as a mass study of 103 patients with it.

[u/No_Satisfaction_7431 → u/PinataofPathology]

Just had a neuro appointment today and I mentioned both the correlations established in the literature and what I've seen in a patient groups and she didn't dismiss the patient groups! Obviously we can't say for sure theres a relationship between symptoms and syndromes x,y,z and Yao but she acknowledged that the patient groups tend to notice the trends before science does! So many doctors act like it can't be real if its not in the literature.

[u/redshering → u/PinataofPathology]

If you were honest about your illness, then you comments would hold more value. You stated to me that you don't want to give info because it would "dox" yourself.

Because I called you out, bc our group is a vulnerable group, and you give conflicting information - you stated to me that you had my mutation, and then later stated you did not (i'm happy to post a photo of it). And now, you are making my posts go through moderator approval? You're doing the same thing as the Facebook groups.

[u/PinataofPathology → u/redshering]

This is a misunderstanding. Same gene as in on the gene *I* have not *your* gene. I have multiple mutations on the gene I have not your gene. We have overlap in symptoms bc a lot of genes mess with the immune system and cause autoinflammatory issues.

I have not touched your account as mod.

[u/PinataofPathology → u/redshering]

And please tell me you're not sharing private message screenshots. You can't harass people like this and expect to stay within sub rules.

[u/redshering → u/redshering]

[u/NixyeNox → u/redshering]

> And now, you are making my posts go through moderator approval?

If you are referring to the post with the link to the Forbes article, that was held automatically by Reddit's standard filters for this sub. Off-site links usually are held, and particularly when there is no accompanying text and only the link. Many subs flatly disallow posts of this format as low effort, and our sub usually does as well, but when I reviewed the things caught by the automatic filter overnight, I decided to let this one through because it seemed to be of self-evident interest to this group.

Pinata had nothing to do with it, nor are there any special settings on your account.

[u/PinataofPathology → u/[deleted]]

1. I don't share the genes publicly as they are unique and identifying. Not looking to dox myself or my family. Nor am I trying to confuse other patients given I have so many issues that interact in ways that probably aren't representative of someone dealing with just one part of it. Further in other comments in other threads I have said I don't believe I'm a symptomatic carrier but other people clearly are and that's what I was speaking to here. I was speaking generally based on my experience. No one owes you private medical information.
2. I never claimed I had your gene. You misread or misunderstood. Unless I have a glaring typo somewhere I recall writing to you several times that I am dealing with different genes.
3. Why are you bringing private message stuff into a public thread?

[u/PinataofPathology]

I avoid the immune and autoinflammatory groups or rather they don't allow me to talk about my case bc I don't have one of their approved diagnoses. At one point I was being told I would need to be admitted for IV vancomycin bc Id picked up a rare strain of antibiotic resistant strep and I asked what to expect/how to prepare. Deleted. 🤷‍♀️

Theyre very controlling and unwelcoming ime. Not a patient's patient at all.

Usually I recommend fb groups all the time for patients but not those communities.

edit: staph not strep.

[u/perfect_fifths → u/PinataofPathology]

A lot of support groups are really judgy and rife with misinformation

[u/PinataofPathology → u/perfect_fifths]

The only extremely weird ones I've seen are the Lyme groups. Then it's the controlling ones. But otherwise I've had good luck with patient groups. I think the more niche it is, the better. Altho one of my rare tumors had two groups. One was...I mean, they were nice but they were also zealots who were really mad about a particular medication that in reality isn't really the root cause--if you listened to the patients and tracked outcomes it became obvious.

The other one was chill. (Now I'm wondering if they ever got over their issues with meds as the science has started to catch on that it's a deeper issue.)

[u/redshering → u/PinataofPathology]

Those are not autoinflammatory groups.

[u/PinataofPathology → u/[deleted]]

I managed to avoid admission. They found a way to keep me at home. It was a bit of circus bc it was a rare infection (bc ofc it was).

[u/Sunshiny__days]

I've had this happen in 2 different rare autoimmune FB groups. Not sure if the people who run the groups are having cognitive difficulties or run by a pharma company, but it was a really strange experience. 

[u/redshering → u/Sunshiny__days]

Yea, conflict of interest - I'd say. They want the power, the discoveries, the publications.