u/Outrageous_Camp_5215

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Bit of a rant incoming.. So yesterday I had my physical with my PCP (internal medicine), and I had planned on addressing some issues that i’ve been having in regards to my hEDS this past year since I’d seen her last. I’ve addressed some things between seeing her last year and now, but thats been more of an ad-hoc situation versus standardized care. (I do want to note that she was receptive to me having hEDS last year)

Some of my biggest issues now are that I don’t have a particular care plan or pain management plan in place. There has been no guidance at least with my care providers in terms of establishing a cadence, for example do I need to get cardiology screenings every year, every 2 years etc (lots of heart issues in the family on top of eds). And for pain management I had some very intense joint issues at the beginning of the year that led to me being doing a round of steroids paired with a muscle relaxant and a meloxicam + 5 months of PT—all of which very helpful, but those were all short term. And due to some workplace policy changes about wfh/in office, I asked her to fill out accommodations for my job and she said no because I don’t have something like Lupus.

I’m rambling but it’s been a very frustrating journey, and I was not really heard at all nor was I offered any guidance on how to manage all this or any help on the pain management front. A part of me wants to say forget it and keep self managing, but I’m in my early 20s and don’t want things to continue to decline so it feels like I’m stuck between a rock and a hard place. Honestly I think my next step will be for me to wait until the new treatment guidance from the Road to 2026 comes out in March, and then I will try to find a new practitioner with more eds experience.

Since the show comes out in about 1.5 months, and we’ve only seen a teaser trailer up until this point—when is the full trailer dropping?

I think some more marketing will help the show, so I hope they drop more trailers and images soon.

Interesting read from Dr. Gensemer, a biomedical researcher at the Norris Lab. Curious to hear other folk’s thoughts on this.

Summary:

A new preprint proposes a framework for “neuro EDS,” a neuro-predominant phenotype within hEDS/HSD. The framework outlines two domains: a cranial and spinal domain, and a neuro-autonomic-inflammatory domain, highlighting the need for integrated care, which emphasizes the importance of future research to refine this phenotype and identify biologically meaningful endotypes.

I’ll add the preprint link she referenced in the comments.

Since the four nations as we knew them have fallen, and folks have been relegated to the seven havens—what do you think the cultural identities will look like in the show?

The air, fire, earth, and water nations all had distinct cultures, especially visually. It was easy to tell where a person was from based on that alone, but since the nations won’t exist in that form anymore, I wonder if there will be any significant cultural markers, especially amongst non-benders (since it seems like majority of people will be non-benders in this show).

And will the 7 havens have more distinct cultures to make up for the void left by the nations?

This morning I was thinking about how i’d categorize myself (mild, moderate, severe, and so on), and i’m curious to see how others think of it and if it is at all similar to how I think of it. For me, I have a lot of system involvement (joint, mast cell issues, dysautonomia, chronic pain, gi issues, skin involvement, migraines, etc.), and though I deal with all of those areas—I wouldn’t necessarily say any of them fall on the extreme side though they’ve all gone through periods of varying intensity. So i’d categorize myself as moderate as I can still do my daily things most days at this point in my life, even if is a little harder some days.

Hopefully this makes sense lol. I’m curious to see how your own personal scales versus how I assess my own.

Now that we’re at mid season mark, rank the coaches!

If the road to 2026 diagnostic criteria has subtypes break off out of hEDS (for example: a type where symptoms mainly mimic classical but without that specified gene(s) showing up on genetic testing, a type where skin involvement and joint involvement is mild to moderate but mcas/immune dysfunction is heightened, a type where autonomic dysfunction has the highest involvement, and a type where all of the above are present) — if something along those lines was to come out, is the expectation that those of us with hEDS would have to be retested? Or would it be a conversation held with your doctor about your closest alignment?

When I originally got dx’d my geneticist did say that I may have to be re-diagnosed depending on what comes out the new criteria, so I’m looking to see other thoughts on this matter.

Since the reunion is around a month and a half away, which couples do you think will still be together by then and which couples will have called it quits?

Which team seems to play with the most joy? And which team seems like they don’t even like each other?

If you were able to reallocate the rookies based on your team’s need in particular, which rookie would you end up taking?

For example, the Mystics need shooting badly so I would reallocate Azzi to them.

And the Valkyries need another big so I would send either Betts of Okot there.

I was doing some reading up the Road to 2026 information to be better prepared for what’s to come in a few months, and while reading I came across the study surrounding the KLK15 gene. In that study, the result was that 34% (67/200) patients with hEDS had a variation of the KLK gene. So if that was scaled larger and potentially 1/3 of the hEDS community was found to have a KLK gene variation, would that end up being a new subtype?

And if that is the case ( or something similar), would that 1/3 end up keeping the hEDS title or would they be moved to a new subtype altogether and the 67% would keep the hEDS title?

I read that similar to the 2017 diagnostic criteria, that new subtypes may emerge, so I’m trying to gage what this would look like logistically.

Toronto currently sits at 3-4, and Portland sits at 4-3. Is this what you expected? What’s been working, what hasn’t been working? And what are your expectations for the team in the next 2 seasons?

Just want to get a consensus here as we’re starting to see how different play styles take shape with these new rosters

I’d say Nakase, Reeves, Hammond, and Smesko are at the top of my list

I think Marsh has done a lot better this year but i’m not sure if it’s because of his coaching or that he just has more capable players this year.

I think Johnson, White, Fernandez, DeMarco, and Brondello are all in the same tier for me

I’m putting Tibbetts a step below for now. I think he’s over reliant on pure talent without doing much actual coaching.

I think Raman and Sarama especially are interesting. Portland’s FO has been making some strange moves, but from a coaching perspective I think there may be something good there.

Mezziane and Roberts are at the bottom of my list. I think Roberts is actually dead last on my list—she leaves a lot to be desired.