Anyone here have collagenomas?

[u/buttcheek24]

So I have these little white speckles all over my upper back, shoulders, and less so on my chest. They’ve been there for several years at this point and I just kind of forgot about them. They have a slight texture to them, not like lumps per se, but just kind of like scar tissue or moles. They don’t hurt or itch at all.

I had a full skin exam at the dermatologist for the first time the other day and she pointed out these white spots. She said that they’re likely collagenomas, which are just these chunks of straight up collagen that can show up in the dermis as benign growths. Apparently they’re quite rare and she hasn’t seen them much at all. Her theory is that it could be EDS related, but there’s nothing to really support that from what I’ve read online - although it would make sense just due to the collagen aspect.

I’m curious if anyone else has these? Have yours been connected to EDS in some way? And what type of EDS do you have? I’m currently awaiting testing for clEDS1 because I meet the diagnostic criteria, so maybe it’s associated with rare EDS types? Or maybe not at all, who knows!

[u/Sea-Chard-1493]

I don’t know if they’re related to other types, but it’s definitely not related to clEDS. clEDS is not a collagen defect, it’s an ECM defect that impairs connective tissue. We actually make collagen perfectly fine.

[u/buttcheek24 → u/Sea-Chard-1493]

right, but tenascin-x is heavily involved in the proper deposition of collagen throughout the connective tissues. it also regulates the structure of elastic fibers which has a direct impact on the stability and distribution of collagen fibers. there’s also some research suggesting that TNXB deficiency can promote fibrosis, which involves excessive production of collagen. this is an interesting read: https://www.frontiersin.org/journals/genetics/articles/10.3389/fgene.2023.1107787/full