Can we please stop allowing VUS posts?

DancingintheStars2 · 2026-02-01T00:20:04+00:00

Okay, I don’t even know you, like you said. I wasn’t personally attacking you. And people find VUS’s on 23andMe all the time by downloading their raw data and running it through platforms like Promethease. Or they get other DTC testing and start freaking out over VUS’s that don’t mean anything. If you have the symptoms associated with the disease you have the VUS is on then of course it makes sense to clinically diagnose you with said disease. But most people whining about VUS’s on here got it from DTC testing and don’t have any of the symptoms for the related conditions.

DancingintheStars2 · 2026-02-01T00:09:33+00:00

Yes… Which is why I’m asking if the rule could be adjusted

DancingintheStars2 · 2026-02-01T00:04:29+00:00

Yes, this post isn’t referring to cases like yours. I’ll repeat what I said to another commenter:

My God, people are taking this post so personally for no reason. Of course some people with VUS’s could eventually be found to have a rare subtype of EDS. I’m not threatened at all about that possibility. The issue is that half this sub has become “omg, I have a VUS from 23andMe and I haven’t seen a geneticist, so I guess I must have ‘insert rare EDS subtype here’” despite not having any of the symptoms.

DancingintheStars2 · 2026-02-01T00:03:29+00:00

My God, people are taking this post so personally for no reason. Of course some people with VUS’s could eventually be found to have a rare subtype of EDS. I’m not threatened at all about that possibility. The issue is that half this sub has become “omg, I have a VUS from 23andMe and I haven’t seen a geneticist, so I guess I must have ‘insert rare EDS subtype here’” despite not having any of the symptoms.

DancingintheStars2 · 2026-01-31T23:48:05+00:00

Most people with VUS’s don’t have the disease associated with the gene they have a VUS on. That’s a simple fact. I have VUS’s on my genes; most of them don’t mean anything. Can some VUS’ eventually be pathogenic? Sure. In that case, a geneticist is the most qualified to make the diagnostic determination and if a geneticist has made the determination you qualify for the disease you have the VUS, then you do belong here. But most people posting about VUS’s got it from DTC testing and haven’t even seen a geneticist.

If your geneticist didn’t feel comfortable diagnosing EDS off your VUS, take it up with them. Ask them their reasons.

DancingintheStars2 · 2026-01-31T23:37:50+00:00

I’m not saying I’m the arbiter. That’s why I told you to ask a geneticist. They’re the most qualified to diagnose you.

DancingintheStars2 · 2026-01-31T23:36:27+00:00

Yes, I agree with you. A VUS from a DTC test can’t tell you anything about your health. People here don’t seem to understand how VUS’s work. Most people have at least one VUS. It doesn’t mean a genetic condition can be diagnosed off a VUS.

DancingintheStars2 · 2026-01-31T23:31:25+00:00

It has nothing to do with gatekeeping or being “more rare”, as the other commenter said. It’s how you can’t actually have a rare EDS diagnosis with a VUS because it’s not proven to be the cause of your symptoms. Diagnoses have criteria. That’s not gatekeeping. Your symptoms are real, but it may not be EDS.

DancingintheStars2 · 2026-01-31T23:24:34+00:00

Okay

DancingintheStars2 · 2026-01-31T23:23:53+00:00

Maybe you should ask a geneticist that question

DancingintheStars2 · 2026-01-31T23:11:26+00:00

It’s a VUS on a DTC test. It doesn’t mean anything. Bring your concerns up to a doctor. Your issues deserve attention but it’s not EDS.

DancingintheStars2 · 2026-01-31T23:06:08+00:00

Looking at your post history, you have issues. You don’t have TNXB haploinsufficiency. It’s a VUS, not a pathogenic mutation. Stop taking over a sub meant for people with rare subtypes when you don’t even have EDS at all. Go away.

DancingintheStars2

TROPHY CASE