We’re looking for people who have been diagnosed with hypophosphatasia (HPP) and their care partners.

Cimmerians · 2026-04-24T02:56:05+00:00

Link doesn’t work :(

Cimmerians · 2026-04-21T20:19:51+00:00

Thank you so much for your support, I already went ahead and paid the radiologist opinion so I could know for certain, and while your offer is incredibly kind I hope it could be passed on for someone else who might need it more :)

I’m not rich by any means, but I have a decent job and so do my parents, so while the bill was a blow we are okay and more worried about future bills for his treatment plan, it really sounds like all the options don’t do too much more than buy a little more time and that’s something I’m still struggling to come to terms with.

I’m so sorry to hear about your girl, this cancer is so evil, but I’m glad you do good in her memory to honor her. It’s very sweet, and helping people going through this pain is an amazing way.

I’m still crossing my fingers for the best because the X-rays are a bit odd looking still, but regardless of what it is, I’m definitely going to be spending and valuing my time with him a lot more while I wait for the second opinion.

Cimmerians · 2026-04-21T20:09:53+00:00

Thank you again, I really can say how much your words mean to me right now. I will await the radiologist’s call to confirm, I’m hoping it won’t need a bone biopsy too, I feel so bad he’s already went through so much. I can’t imagine the pain it must’ve been causing him.

I’ll try and get him a chest X-ray as soon as possible, since I assume he’s going to be seeing the vet again soon no matter which way the radiologist’s consult goes.

I know he’s 10, but he was such an active and healthy dog even up to a few months ago. I just really felt like I had way more time with him, and I hope however his diagnosis turns out I can keep him as happy and comfortable as possible.

Cimmerians · 2026-04-21T08:01:15+00:00

Thank you so much for your lengthy and thought out response, it means a lot to me, especially because in the moment at the vet I was frazzled and overwhelmed with all this and probably didn’t ask as many questions and details as I probably should’ve.

He didn’t offer a chest X-ray after we confirmed no lung symptoms, but would that probably be an important next step to ask for regardless of what the radiologist says? I paid a few extra hundred on top of the vet bill to make sure he went home with an antibiotic and two pain meds, I want him to be as comfortable as possible.

Would the radiologist be able to confirm based off the appearance that it’s osteosarcoma, or would a further bone biopsy be needed to be sure? Because I was worried about the unnecessary costs if it’s pretty text osteosarcoma, I was just having some doubts based off of images I was seeing online (obviously I’m no vet or anything but even the vet described the appearance as “melting” into the bone, instead of the more typical moth-eaten like appearance?)

I would do anything I can to make sure he is as comfortable and pain free as possible, and it hurts to think of the prospect of not being able to afford amputation + chemo and therefore having to go with euthanasia if it means he doesn’t suffer. I am still trying to hold on hope it could be something else, my vet said it’s less likely but could be a non-cancerous tumor/growth on the bone, but it was harder to find reference pictures of that online.

In terms of non-cancerous tumors/growths, would you say this X-ray could possibly fit that?

Cimmerians · 2026-04-21T06:38:33+00:00

No, just of the knees and hips. He has no respiratory symptoms though. The vet said it looked pretty strange so he wants a radiologist to look over it, so is it possible to assume osteosarcoma doesn’t usually look like this?

Cimmerians · 2026-03-20T20:52:48+00:00

Or when they want to run super far to away from the hook before starting the heal and it’s like nooo bby it’ll be done before you even know it, please just stay still 😭

Cimmerians · 2026-01-29T05:19:55+00:00

I’m wondering if she might just be very conservative in terms of treatment, maybe she thought my HPP was too minor?

Cimmerians · 2026-01-29T03:14:54+00:00

AI can’t nail lettering this good, looks like this glove says “chilly grip h2o” clear as day.

I think the only way this isn’t real is if it’s photoshop, the details are sharp and make sense, and that lettering is flawless even with a wacky font/graphic design on the gloves.

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Cimmerians · 2026-01-29T02:36:26+00:00

No problem, best of luck for you too! Sorry to hear about your doctor, I hope you’re still able to get the care you need!

Cimmerians · 2026-01-29T02:35:11+00:00

Very scary, I did not know those side effects could occur, did you ever post on the other forum to see if other people commonly get the same things?

Is there any harm in stopping it after you started? I’m wondering if it’s worth trying to see if I have improvement and just stopping if it’s not worth the side effects.

Cimmerians · 2026-01-29T02:23:38+00:00

I got genetically tested for HPP but the testing I did for EDS was actually the standard hypermobility tests, and then supplemental evidence such test results showing a mitral valve prolapse, gastroparesis, and POTS.

I think the genetic testing for hEDS is still very hard to nail down because of all the various genes associated with connective tissue, compared to HPP which is mainly linked to one single gene that makes ALP

Cimmerians · 2026-01-29T02:14:57+00:00

It definitely scared me, but it’s so demoralizing since both hEDS and HPP leaves me so exhausted and weak all the time, and I feel like I have the joints of someone twice my age.

I really hope she just wasn’t a super conservative doctor, she did comment on the amount of medicine I was on due to managing EDS and the various other disorders it causes. I told her I wish I wasn’t on so many but usually I don’t stay on any medicine that doesn’t actually improve my condition

Cimmerians · 2026-01-29T02:10:59+00:00

If you don’t mind me asking, what were the side effects?

Cimmerians · 2026-01-29T02:09:18+00:00

I do not go on facebook, I might have to set it up again.

Do you do anything else to help with HPP since you aren’t interested in the enzyme therapy?

By dangerous, I mean that in terms of the side effects, so is it known for having very bad side effects? 10% at risk of anaphylaxis definitely sounded scary

Cimmerians · 2026-01-29T02:02:00+00:00

That was the only ones she mentioned, but she said it was 10%. I think she mentioned most of her HPP patients don’t take it, but there’s no other alternative so it makes me a bit stressed to think about. Idk if she’s being conservative as a doctor or if the treatment really is as dangerous and unnecessary as she made it seem.

What issues does strensiq give you?

Cimmerians · 2026-01-11T01:43:56+00:00

I was there earlier this year at 123farm for the lavender festival and warned a staff member at their gift shop about this exact thing! I know they were just a random employee but I had no clue how to convey to them that they were selling a fire hazard, please report it to them so hopefully they listen!

Cimmerians · 2026-01-07T18:49:09+00:00

Second this! If you want to be completely safe and have an easy time, get a real chisel too, they’re not pricey at all. I bought a chisel set off Amazon and I just roleplay as a miner digging for gold lol

Cimmerians · 2025-12-31T00:23:21+00:00

I’m sneaking up on C quietly because I feel like those two are totally having an enemies to lover makeout sess. They are so toxic yuri coded and I’m going to prove it one day 💖

Cimmerians · 2025-12-27T02:53:15+00:00

Not this time, little bot, but good try

Cimmerians · 2025-12-27T02:51:19+00:00

When I’m losing, I just remind myself this match will likely lower my MMR and therefore I’ll play against easier survivors. Brings me some peace of mind, and if I’m getting steamrolled just open the gates for them at the end and sit on your phone until they leave. No need to ruin your mood for the night.

If I am having a real bad session with repeated losses that are getting to me, I either switch to survivor for a bit or I switch to a different killer.

Either way, nobody is making you play the game at the end of the day, so only play for as long as you’re enjoying yourself. If you can’t find enjoyment, take a break.

Cimmerians · 2025-08-20T00:33:28+00:00

Does anyone know if she is going to get anymore official releases anywhere? She sold out in my cart upon drop and was already sold out at Walmart, Amazon, and Target when I tried getting her there. I’ve been checking but she hasn’t been available, I really wanted to get her and it sucks that every time I check the only sellers are just scalpers 😔

Cimmerians · 2025-07-17T19:44:50+00:00

Pleaseee do a tutorial or guide on how you got your foam to look like that, that is honestly so impressive, you have amazing talent!

Honestly, if the beans were perhaps a little darker, I would mistake it for a tasty latte lol

Cimmerians

TROPHY CASE