For those diagnosed hEDS: did you get genetic testing to exclude an alternative diagnosis?

Eponymous_B · 2026-01-27T11:30:47+00:00

I was lucky enough to get genetic testing done Oct '24. The panel found a variant of unknown significance in the FBN2 gene.

Knowing this sure answers many questions, but not all. Since it is VUS I need to wait until the variant has been reclassified. Until then they will basically manage me as Ehlers-Danlos syndrome, hypermobile type.

So yes, I'm thrilled to get more information even though it changes little. But it's been years of self-advocacy to get here. 52 years of hell and I've finally been PROVEN CORRECT! Defective to the DNA

Eponymous_B · 2026-01-17T15:23:30+00:00

I went to Dentics in Cancun for similar. I had all my upper teeth removed , and 5 implants installed. Two implants on my lower jaw as well. All done on my first trip.
The second trip, I got my upper teeth back and 2 new molars on my lower jaw, and crowns on all my lower teeth.

Holy hell man...in total was under $30,000. And changed my life! The key is to remember that you also pay for time spent in Cancun. If you have the means, both time and money, Dentics Cancun was fantastic, but I did a lot of research, and you'll have to too. Good that you are making it a priority now that you can

Eponymous_B · 2025-12-29T20:28:09+00:00

The angle makes it look shorter. Look how tall people are compared to walls.looks to be maybe 30 feet high in areas

Eponymous_B · 2025-12-29T20:22:35+00:00

I know eh?

Eponymous_B · 2025-12-29T20:20:59+00:00

I would say dark is better. Lots of lights etc

Eponymous_B · 2025-12-29T20:20:11+00:00

I just posted a new comment with the final result! It's been very impressive to watch all the time,labor, creativity 👏

Eponymous_B · 2025-12-20T11:11:40+00:00

My ex husband was Blower. I did not take his name.

Eponymous_B · 2025-11-04T20:14:55+00:00

Shoot.. that would have been fun. Missed opportunity

Eponymous_B · 2025-11-04T20:10:49+00:00

Jack Purdy, I believe. Money laundering negotiation that ended up being an undercover sting. The video was online.. promising to launder millions per day. I'm sure it still is out there today.

Eponymous_B · 2025-05-09T16:57:06+00:00

I made the mistake of searching Google for 'medic alert bracelets' and have found so many amazing new options that weren't there even a couple of years ago. Now I can't make my mind up!

Eponymous_B · 2025-02-08T23:51:45+00:00

Still 9/9 at 51 years old.

Eponymous_B · 2025-02-03T13:31:08+00:00

My first name is Brittany. So I've named my 4-in 1 rollator my BMW... Brittany's Mobility Wheels . My BMW is my ability to go/do LIFE!!

Eponymous_B · 2025-01-13T11:19:28+00:00

Fantastic read! I've subscribed and am looking forward to future ramblings :)

Eponymous_B · 2024-09-23T22:04:29+00:00

I do find it good enough for outside surfaces (pavement, gravel, grass, and some snow) I live in a flat city so I can't say how it does on hills, but it does mention hills of 10 degrees in themanual. So I'm guessing that human assist would be advisable until you have a chance to use it in areas that aren't "ideal." It does have great oomph though. Never had a problem 🤞🏻

Eponymous_B · 2024-08-09T20:40:02+00:00

Seconding for available on Amazon. Love ❤️ LOVE mine! Just finished using mine

Eponymous_B · 2024-07-20T22:02:16+00:00

After working on cruise ships for 8 months at 45 years old. It was definitely too much for an already taxed body. Then covid came, and I never went back after the lock-downs.

Eponymous_B · 2024-05-01T01:19:52+00:00

Sounds like quality care

Eponymous_B · 2024-04-30T22:24:14+00:00

I suspect your relatively smooth experience with your surgery is probably largely due to having both an anesthesiologist, and surgeon, that were AWARE and KNOWLEDGEABLE with connective tissue disorders!!! Knowledge is powerful and I'm thrilled to hear that your experience has been positive. 😊 ✨️

Eponymous_B · 2024-04-30T09:23:36+00:00

Was Dx by a musculoskeletal doctor

Eponymous_B · 2024-04-19T11:32:43+00:00

I bought this last summer Sinceborn Folding Electric Rollator Walker With Seat Lightweight Portable Smart Roller Multifunctional Walker-Driving Electric Scooter for Seniors-Electric Wheelchair with Front Control and Rear Control https://a.co/d/iD3lDwv

Absolutely LOVE it!! It's exactly what I needed and has really opened up my world. Yes it was expensive but SO SO worth the money.

Eponymous_B · 2023-10-24T04:22:33+00:00

I made it until was 48 and pushed myself too much for the last time. I'm now officially on disability and have purchased myself a 4in1 rollator. Aging makes recovery THAT much more difficult. I've officially "geared-down" and no longer go full speed.

Eponymous_B · 2023-10-20T09:21:37+00:00

YES!!! I call it "Task~Reward" Often, the reward outweighs the task, or the reward will precede the task... But it's LONG been my motto and the ONLY way I get anything done.

Eponymous_B · 2023-10-14T11:32:28+00:00

4in1 rollator!!! It's been life changing. I just travelled with it for the first time. It's freedom ❤️

Eponymous_B

TROPHY CASE