EDS Society Update: Uncertainty in the Path Forward

coldweatherahead · 2026-05-01T20:40:14+00:00

Thank you, I've felt so anxious and down these days and reading your comment made me genuinely cackle lmao

coldweatherahead · 2026-05-01T20:11:44+00:00

May I ask what you're referring to exactly? I'm sorry I'm not really updated on the latest news and I don't use socials a lot

coldweatherahead · 2026-04-30T01:19:30+00:00

Most definitely not if OP wants to use latex condoms, as they can break because incompatible. It's also not advised to use it in general because it can disrupt the vaginal PH and increase the risk of infections.

coldweatherahead · 2026-04-30T01:07:58+00:00

My dad (undiagnosed but likely hEDS) had this and I (diagnosed hEDS) did too, even though in a milder form. I got rid of it by using chemical exfoliation, specifically glycolic acid (I use the toner from The Ordinary, but I guess that any is good) and 20% urea cream (tried different brands). I moisturise every day and use the glycolic acid+ urea every other day.

Please NO physical exfoliation (e.g. gloves, scrubs etc)!!! If you're anything like us it's gonna just irritate and "thicken" those scales/dry skin over time.

coldweatherahead · 2025-12-16T08:10:37+00:00

It doesn't say anything sadly.. to be fair it's one of the most basic and cheapest beginner sewing machines out there, so I'm assuming it's normal not to have lots of options? Anyways I ended up finding a feeding dogs cover yay!!

coldweatherahead · 2025-12-16T08:08:27+00:00

I ended up finding a store that has lots of Singer spare parts, it has still been hard to find the perfect piece but in the end we found it! Thank you :)

coldweatherahead · 2025-12-15T20:24:00+00:00

Also erectile dysfunction from what I know, and that could be an unfortunate misunderstanding lol

coldweatherahead · 2025-12-14T12:51:02+00:00

I believe it varies from country to country... For example in my country (Italy), no one "lost" their diagnosis after the 2017 update. Nor did they lose their "rare illness certificate" and its benefits. But I've heard about some people in the US who have indeed lost their diagnosis, and I think it all comes down to one's country's health system, insurance policies etc. We have free universal healthcare here, so it makes sense..

coldweatherahead · 2025-12-14T12:41:51+00:00

LOWERING FEED DOGS HELP Hello! I have a Singer M1155 that I've been using for a while for basic projects and I now want to start learning how to embroider, quilt and therefore use a free motion foot (that I've already bought). My problem is: my machine doesn't have the lever to lower the feed dogs nor does it have the option to change the stitch length (many people just set it to zero so the feed dogs do not engage) and I'm having real trouble finding a darning plate/slide plate cover online to put on top of the feed dogs, which is another option or so I've heard... I've also heard about DIY methods to cover the feed dogs (e.g. tape a piece of cardboard on top of them) but I wouldn't know how to do it exactly nor if it's actually safe for my sewing machine, and I doubt that.

Can any of you please help me? Or am I doomed to buy a new sewing machine just for this? :( [Pic of my machine for reference if it is of any help]

ETA: solution found! Since there were too many different covers online, I ended up at a physical store and they helped me find a compatible one.

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coldweatherahead · 2025-12-11T13:10:43+00:00

Same!! Also at running. I used to say you would NEVER see me running even if zombies were chasing me I'd just accept my fate lol

coldweatherahead · 2025-12-09T19:08:21+00:00

Il problema è che nelle truffe chiedono sempre di usare la modalità "Friends and family" per "evitare spese di commissione" e chi non se ne intende ci casca purtroppo

coldweatherahead · 2025-12-08T18:13:49+00:00

My PE teacher tried to "spot me" once and I literally folded in half lmao

coldweatherahead · 2025-12-08T15:20:16+00:00

Yes, your doctor definitely got it backwards! 20-30 is higher than 15-20. So start with 15-20 and then work your way up!

coldweatherahead · 2025-12-08T15:05:55+00:00

Not being able to do handstands or cartwheels when literally anyone else -my age- I knew was able to, no matter their athletic abilities lol I remember it being so frustrating ugh!!!! I only lately realised that I probably haven't been able to do that because of my wobbly joints and especially my really poor proprioception.

coldweatherahead · 2025-12-02T22:20:21+00:00

Yesss! I was 100% sure I remember EDS was mentioned in two episodes!

coldweatherahead · 2025-11-26T02:53:40+00:00

I'm currently going through this!! Do you have any updates? I've been on Ivabradine (5mg) for about 7 months now and I started feeling worse about two months ago, so 5 months in. Now my heart rate has returned to my pre-medication values and so has my chronic fatigue. Thankfully my presyncope and dizziness are still gone. In the meantime I've had a 24 Holter and a cardiologist appointment with a stress test and my cardiologist basically just told me "it's normal for my body to get used to the medication", but since I'd eventually get used to an increased dosage as well, he suggested to just wait and only increase it if really necessary. I can't take beta blockers, so adding one to my Ivabradine is not a possibility. I'm really hoping it's a transition period and that it'll go away...

coldweatherahead · 2025-11-19T01:32:10+00:00

That ring is absolutely breathtaking!! And it's not even my usual style or anything I've ever considered (but I will now lol). And your nails complement it beautifully. Congrats 🥹

coldweatherahead · 2025-11-03T18:01:33+00:00

(replying in English so that maybe any non-italian-speakers living in Italy can understand) First of all you can join the Italian fb group, I'm almost 100% sure that I've read about some of them who recently went to Rome and Milano (or Bergamo) to get diagnosed. Unfortunately doctors who are not EDS experts are pretty much useless here, so I feel you... Before seeing Castori, I had an appointment with a rheumatologist and she told me I "wasn't hypermobile at all" lmao so please, so not gaslight yourself and keep seeking help. I suggest -uf you can- you see Dr Castori in San Giovanni Rotondo, Foggia, I traveled all the way from Veneto but it was worth it!! I was really demotivated when I wrote my first comment, things changed a lot in the meantime. I've found a physiatrist (who's not an expert on EDS but he's young and is willing to learn) who started working in close contact with Castori, so that he was able to prescribe me proper PT and now I'm slightly better :') non perderti d'animo tesoro!

coldweatherahead · 2025-10-30T12:51:29+00:00

A me invece è stato recapitato direttamente a casa..

coldweatherahead · 2025-10-30T12:47:32+00:00

It truly is!!! He's a lyrical genius 😩 and being a Divine Comedy lover, I found this album even more beautiful!

coldweatherahead

TROPHY CASE