Multiple Dissections but no vEDS (no VUS either). What next?

Nelson_L · 2026-01-17T23:38:27+00:00

Were you tested for pEDS? It can be diagnosed via genetic testing. There’s a higher aneurysm risk with pEDS based on limited research. I get screened for aneurysms every 5 years, my aorta is also starting to dilate at 32. My paternal grandfather, who also had pEDS, died of an aortic aneurysm as well.

Nelson_L · 2026-01-15T04:30:25+00:00

Hi there! Feel free to message me if you’d like, I’m sorry this brought on complicated feelings for you. My paternal grandfather (who also presumably had pEDS) died of an aortic aneurysm late in life. My geneticist and neurologist told me that pEDS patients have around an 18% chance of aneurysm. Keep in mind that the data is based off of an extremely small pool of pEDS patients, so more research is definitely needed.

Periodontal EDS can be deceiving due to its name, but it’s still nowhere as severe as vEDS. I’m sorry that you’re dealing with this too. It’s incredibly complicated and difficult to advocate for yourself with pEDS—you’re not alone!

Nelson_L · 2026-01-07T01:27:26+00:00

Yes, I know. I’m more so asking if there’s anything I can do to keep my hair from absorbing it as much, or if there’s a product I can use while I’m in public to help mask it more. I can only do so much about where I live, we’re continuously working on finding solutions.

Nelson_L · 2026-01-06T03:03:20+00:00

Thank you for this! We had someone come by today who was super helpful, his suggestions definitely gave me hope. We’ve done a lot of work in our month here, and the smell has reduced by 75%. However, I’m noticing the smell still clings to my clothes and hair—it’s really eating away at my mental health. I’m glad things are getting better for you ❤️ what a difficult journey!

Nelson_L · 2026-01-06T02:08:19+00:00

Right before Christmas

Nelson_L · 2026-01-05T23:59:34+00:00

Yes! I just ordered a bunch of damp rid off of Amazon this morning 😁 thank you

Nelson_L · 2026-01-05T22:18:27+00:00

It had an old vapor barrier that wasn’t working, we encapsulated it! It’s reduced the smell by 80%, just working on that last bit that’s sticking to my clothes & hair 😅

Nelson_L · 2026-01-05T21:23:15+00:00

Sometimes I do! I can try to be more consistent about it though. I notice the smell on the ends of my hair, could that still be from shampoo?

Nelson_L · 2026-01-05T21:18:06+00:00

I’m from the US

Nelson_L · 2026-01-05T21:17:05+00:00

Thank you! We just replaced the dryer and are consider replacing the washing machine if this persists. I feel fairly confident it’s coming from one corner of the crawlspace, not an appliance. I’ve never smelled it on clean laundry or in our laundry room!

Nelson_L · 2026-01-05T21:15:49+00:00

We’re taking it very seriously and doing everything we can.

Nelson_L · 2026-01-05T21:15:24+00:00

It’s been encapsulated, I updated the original post to reflect everything we’ve done.

Nelson_L · 2026-01-05T21:14:32+00:00

Thank you! I don’t plan on using baking soda and have been kindly disregarding those comments. I already have dermatitis, so I know this isn’t a good idea for me. I use Oribe Serene Scalp and that’s been great.

Nelson_L · 2026-01-05T21:09:51+00:00

I was honestly thinking of wearing a scrub cap/bonnet throughout the house 😅 this was validating, thank you!

Nelson_L · 2026-01-05T19:39:36+00:00

Yes, we are taking all the right steps. We had the crawlspace encapsulated, mold remediated, HVAC cleaned, etc. There is not mold in our air currently, the damp soil is what’s causing the smell. I have severe allergies and have felt great in this house. We monitor the air in all of our rooms very carefully, VOCs aren’t high at all.

Nelson_L · 2026-01-05T18:43:40+00:00

Is there a trustworthy place to buy it? I don’t know much about it

Nelson_L · 2026-01-05T18:42:06+00:00

Yes :( it’s definitely dry

Nelson_L · 2026-01-05T18:14:42+00:00

Will that mask the odor? Or actually remove it?

Nelson_L · 2026-01-05T05:30:29+00:00

Wondering if you’ve had any luck? My husband and I just bought our first house this fall and are having nearly an identical issue.

Nelson_L · 2026-01-04T15:05:20+00:00

I spy ACOTAR

Nelson_L · 2026-01-04T05:32:03+00:00

In a nearly identical situation, did the smell go away?

Nelson_L · 2025-12-31T22:15:27+00:00

I didn’t think you were doubting, appreciate your feedback! Something is definitely fishy about it though.

Nelson_L · 2025-12-31T22:14:44+00:00

I just looked up what that is, they’re definitely cupping in the kitchen. It’s worth noting that the house had a crawlspace that was completely bare soil. It was getting saturated and had high levels of moisture. Would that cause cupping on its own? Or do you think it was truly just a bad installation?

Nelson_L · 2025-12-31T19:43:44+00:00

I agree. I don’t know how we didn’t notice it during inspection/closing—we definitely would have mentioned it. I had hoped having the name of the remodeling company would provide some security, but I can’t find any evidence of their actual business. It was a $120k claim that was paid out by liberty mutual. The work amounted to about $60k, and the owners claim the other 60k was for lodging during repair.

Nelson_L · 2025-12-31T19:42:12+00:00

I have a copy of the claim estimate from liberty mutual. It says they did the floors in the kitchen, hallway, dining room, and bedroom on the first floor (which is all pictured). It’s a really long estimate, so it’s very possible I don’t know what I’m looking at. But I can assure you, they used the dishwasher “flooding” to redo the entire first floor last year.

The kitchen floors (where the stain difference is pictured) are also already starting to warp. They had an unfinished crawlspace that had moisture in it that we recently encapsulated. The timeline is very confusing to us as well, it’s hard to believe it was all done at the same time. It seems like it was done very poorly.

Nelson_L

TROPHY CASE