fandomsecrets | [ SECRET POST #3348 ]

⌈ Secret Post #3348 ⌋

Warning: Some secrets are NOT worksafe and may contain SPOILERS.

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[Dr. Who]

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[Babylon 5, Susan/Talia]

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[Neverending Story]

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[Maximilian Dood and Benny]

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14. [SPOILERS for Avatar: the Last Airbender/Legend of Korra]

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15. [SPOILERS for Tsubasa Reservoir Chronicle]

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16. [SPOILERS for The 100]

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17. [SPOILERS for Legacy of the Force]

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18. [SPOILERS for Halo 5]

Notes:

Secrets Left to Post: 00 pages, 000 secrets from Secret Submission Post #478.
Secrets Not Posted: [ 0 - broken links ], [ 1 2 - not!secrets ], [ 0 - not!fandom ], [ 0 - too big ], [ 0 - repeat ].
Current Secret Submissions Post: here.
Suggestions, comments, and concerns should go here.

Flat | Top-Level Comments Only

I loathe the term and I actually have hypermobility syndrome (I've only seen it used in connective tissues disease circles, but that makes sense, since those are the one I come in contact with).

OP - Yeah, I have a chronic illness and spend 90% of the time in agonising pain or utterly exhausted and for reasons I can't articulate, it annoys the hell out of me. People aren't magically going to believe I'm in more pain than they can see just because I use spoons to describe it.

What bothers me is that while I understand it tries to make things visible, it makes it "cutesy", and I dislike this tendency of making diseases or conditions "cute" or worse, romanticizing them.

I think that's it. It's simultaneously patronising and romanticising. Like we all belong to a special club rather than, you know, having debilitating illnesses.

I can't remember if I knew you were bendy too, but hi.

I'm seeing genetics specialists about Ehlers-Danlos diagnosis probably this month or next.
I have all the fun related problems so it's not really fitting with Benign JHS anymore.

I'm considering genetic testing, as the side-effects are getting progressively more noticeable over time, and I never got an official diagnosis. It just costs a bit of money, but it might be worth it. Problem is I'm overweight and that does not help, especially not with the ankles in my case.

I'm seeing a clinical geneticist from one of the big city hospitals who comes down to lecture at the uni and consult on complex cases at our hospital (I guess I'm complex. Yay?). I'll let you know more about the process if you're interested? At the moment his intern is putting in requests for info from all my doctors and specialists and they want a family history before the appointment.

All the joints in my legs are bad and I've never been overweight, so if they try to tell you it's only an issue of weight, they're misinformed. Hypermobility puts you at risk of developing osteoarthritis, too.

It's worth sort of going through the list of conditions that can be associated with hypermobility and seeing if any of them might be worth being tested for on their own, I think. I wish I knew earlier about my heart and what was causing all the weirdness. There's also a connection between EDS and anxiety because it causes some people to overproduce adrenaline. I finally know why I get really restless and jittery for no reason.

Okay. Geez. I can ramble.
If you ever want to talk about anything related to this you can pm me. :)

I am interested if you do not mind! (And I have anxiety)

my heart is actually why I'm considering testing. I did not have trouble so far - but it's the one thing that really worried me as a possibility.

I disagree completely on the terminology, but I wanted to give a shout out to a fellow bendy. I have hypermobility syndrome as well, possibly EDS-H, but there's not a specialist in my state who treats it. The only one that I am aware of is at UW and is only interested in the Vascular type, not Hypermobility type. Since he's a medical researcher, he can pick and choose his clients.

Ah, that sucks! As I said in my other post, i'm considering genetic testing (there's a good clinic in the city where I work), I just worry about the cost, even with social security.

Yeah, the cost for genetic testing is ouchie if insurance doesn't cover it. Especially since I believe there is only genetic testing for certain types of EDS and Hypermobility isn't one of them. Last I knew, at least. It makes it very difficult to diagnose, though if you have a good geneticist who is EDS aware then you might luck out.

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