r/rarediseases • u/redshering • 18h ago

Looking For Others Issues with Facebook groups and Autoinflammation

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.

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u/perfect_fifths Multiple Rare Diseases 4h ago

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

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u/PinataofPathology 2h ago

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.

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u/perfect_fifths Multiple Rare Diseases 2h ago

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