For anyone wondering, there are plastic finger ''braces'' available! :) They are a lot cheaper if you can't afford the silver ones, they are called oval 8 splints
The biggest problem is they aren't very durable, but yes! Definitely an option for those who can't afford the silver ring ones. Don't look as nice, but definitely work in a pinch if need be. Also of note, they aren't custom tailored to the finger and you may have to search around a bit for a size that fits if you have larger or smaller fingers.
I've been looking for youtubers with EDS or HSD so I won't feel as alone as I do right now. I have HSD but will probably meet the criteria for hEDS in a couple of years (I keep getting worse and worse), so this is really helpful. Thank you for sharing your disability.
I've only had my ring splints for a month and the difference is remarkable. Haven't tried playing piano with them yet, though. Still building strength. My hand therapist told me to buy the cheaper ones and he adjusted them for me.
I'm seeing a hand therapist to get measured & assessed, then sending all that info to zebrasplints.org to get the rose gold fill splints. I figure I could even post the thermoplastic splints to her, so she can use them as reference & send them back with the gold splints.
I have EDS and you're one of the only people online that I can find who has it!! I'm also queer/trans so the experiences of already having my health overlooked by doctors also made my diagnosis hard!
Have you seen any videos of Jessica Kellgren-Fozard? She's disabled with EDS (and more) and she's queer AF! Just a recommendation if you haven't heard of her. 😊
Thank you for all your openness! I am so glad I found your channel. I also have EDS and it is wonderful to have someone being active about awareness. love ya
Such an interesting topic! I thought the braces were fashion, and I was already fascinated by them because they are really pretty, and I've never seen rings like them. But their function makes them even cooler! Thank you for sharing, I would never even have heard about EDS otherwise.
Thank you! I do adore them. I think there's this weird idea out there that medical aids need to be function-only and never pretty, and only ever come in black and tan, to be really useful... but medical aids can be such a part of our identity that I think they're even better when they're also super cool-looking! :D
Lol... I love that the first thing you address is that the splints are not for show...lol. I ordered 4 splints through etsy (rural and low specialists available), and I wore them out for the first time. Of course someone, 2 someone's immediately complimented me on my "jewelry " ..😁. I have now gotten use to those splints and ordered 4 more. Even through etsy, I'm up to almost $400 and I still have more splints I need. It is not a cheap endeavor, either path.
Yes, my disability does limit how much I can do. I am bedridden since 15 and got a pain pump at 19. I stopped playing the guitar, drawing, etc. It's unfair how EDS affects everybody differently, most people are somewhat functional and I wish I wasn't envious.
@@robinhahnsopran Thank you. I obviously don't meant to say you don't have struggles or don't suffer as much, all the experiences are valid. Thank you for taking the time to respond and for sharing a bit of what our world is with other people. However it can be frustrating to see no representation from more severe EDS cases online, but it also makes a lot of sense because it's a lot of work many of us are unable to do. I've made my choice to not be a part of the EDS "zebra" community in the time being because it's bad for my mental health. It makes me very depressed to see other zebras and think "why am I not like that?" "I wish I was her", or just very angry when I see some things online. But that's okay too, those communites are really helpful and important for most people, so I am happy they exist. I hope you're well and stay safe. P.D there's no finger splints in Mexico, and shipping from etsy is so expensive :(
Thank you for sharing with us, Robin. Having studied, and studying with people with disabilities (mental and/or physical) has been an eye opener, and made me more understanding and patient with people.
@@robinhahnsopran Agreed. Through openness and understanding, we can really go places. I guess we all have difficulties more or less. I need darkened glasses, and I'm face blind (yes, Clark Kent without glasses has me fooled).
Other etsy cons: most don't come with dots. I started with etsy, and they didn't quite fit the fingers I ordered for correctly--but I also couldn't remember which was which. You will want to add them on yourself. I do love that on etsy you can get gold and even rose gold! and sparkle. also cats! Though gold will scratch more easily than silver. I like to wear my (slightly looser pair of) compression gloves over my splints quite often, particularly because it keeps rings I wear on adjacent fingers from clashing.
Oooh, I didn't realize the Etsy ones may not come with the dots, but that makes sense, given many of them are made of simple material like wire! Super useful. Thanks for sharing!
Shoulders dislocated in my sleep, roll over and wake up screaming. Yep. My life until age 20. Now I just basically don't sleep properly so I can constantly guard to avoid it. Fun! :D /sarcasm Don't have a diagnosis, but yeah, definitely some sort of hypermobility. Thank you for talking about how exhaustion effects your ability to do shows! Also been considering how much of my disability I should show while I reenter the job market. 😅
Gotta love being afraid to sleep because it hurts~ /also sarcasm It's such a fine line to walk, to decide how much to share and when to do it! Being disabled is in itself a full-time job, just an unpaid and underappreciated one, not just managing the disability itself but also managing other peoples' expectations of the disability. I feel you. Sending good thoughts and lots of spoons for your work hunt!
Excellent video, and thank you for leaving the mild body horror to the end :P Also, did I catch correctly that opera calls blocking 'traffic'? That's DELIGHTFUL
I wanted to make sure it was easily skippable for people who really didn't wanna see it :P And yep! It is indeed called "traffic", and I definitely totally imagine us all walking around the stage in tiny Flinstones cars powered by our feet!
hEDS here too, posted in your 3rd video. I just tried that thumb twist and wrist tendon thing, umm yep…. New levels of weird I didn’t know about. I could do the others already.
They have some plastic ones on Amazon I've been using until my etsy ones arrive. Unfortunately due to covid, even getting an official diagnosis is dragging.
I've got 5 of these rings. Learnerd recently that all my fingers will need them (not the thumbs). So that's quite annoying. Eds sucks. Especially when you have multiple diseases.
How tight do you get these made? I am about to order some on Etsy, but I’m unsure how tight I want them. I don’t want them to fall off OR be uncomfortably tight!
I am SO glad I stumbled apon you! My daughter is 16, was diagnosed with HSD yesterday with further testing for EDS in the next few months. She is also bi, a musician (Attends an Arts High School for Vocal Performance, wants to go to college for Contempoary Musicianship - sings, plays guitar, bass and piano. Do you find the EDS has effected your vocal chords? And does your hands hurt when writing? If so, does the splints or compression gloves help? Thank you!!
I'm so glad she's getting the support fro you and from her medical team! :) Yes, it's definitely affected my voice - stabilizing the vocal apparatus is a little harder for me than for most people! But with work and some very specific focus on breath and posture, it's been something I can manage. As for writing: yes, absolutely! My hands get sore so fast when writing. I type when I can, and often when I know I'm going to need to do a lot of it, I double-layer the compression gloves on top of the rings, which helps a lot!
Is there a soft shoulder brace or some kind of compression garment you can wear in your sleep to prevent shoulder dislocations? Thanks so much for this video. And for having real, human-composed captions!
I haven't yet found one I'm brave enough to try - I'm a mover in my sleep, which is sort of the problem, but it also means a lot of restricting aids are just things I find really uncomfortable at night! :( Still tentatively looking into it, though. I know I need a better solution than "Oh, it's fine, it doesn't happen EVERY night". xD So glad you liked it! Having captions is super important. :)
@@robinhahnsopran Yeah I can understand why Ioose clothing is comfy at night but waaaay-loose joints do make you wake up screaming, so maybe worth considering ;) Also I'm glad your captions are so great because I shared your video with an amazing TH-camr that I highly recommend (who also has EDS and is deaf), Jessica Kellgren-Fozard.
@@robinhahnsopran P.S. after watching your channel intro video, I'll add that other reasons to subscribe to Jessica Kellgren-Fozard are that you may also like her series of historical profiles of queer and/or disabled people, videos about representation in the media, about disability and chronic illness. And the adorable content with her and her wife. Seriously.
@@resourceress7 Oh, wow - she's one of my favourites, too! :) I SO appreciate that when you see my content, you think of her! What are your favourite profiles she's done so far? I'm partial to Julie D'Aubigny, for clear opera-related reasons! ✨✨
Hi! You're right, it does make me sore to play too much, so I tend not to, and avoid playing as much as I can when teaching or learning new repertoire. It's like typing, for me - it's a good idea to wear compression gloves while playing, and then wear lots of support afterwards! :) Thanks for asking! Glad you liked it!
For anyone wondering, there are plastic finger ''braces'' available! :) They are a lot cheaper if you can't afford the silver ones, they are called oval 8 splints
The biggest problem is they aren't very durable, but yes! Definitely an option for those who can't afford the silver ring ones. Don't look as nice, but definitely work in a pinch if need be. Also of note, they aren't custom tailored to the finger and you may have to search around a bit for a size that fits if you have larger or smaller fingers.
I've been looking for youtubers with EDS or HSD so I won't feel as alone as I do right now. I have HSD but will probably meet the criteria for hEDS in a couple of years (I keep getting worse and worse), so this is really helpful. Thank you for sharing your disability.
I've only had my ring splints for a month and the difference is remarkable. Haven't tried playing piano with them yet, though. Still building strength. My hand therapist told me to buy the cheaper ones and he adjusted them for me.
Oooh, I like this option! I'd never thought of suggesting this one - so glad it's working for you!!
I'm seeing a hand therapist to get measured & assessed, then sending all that info to zebrasplints.org to get the rose gold fill splints. I figure I could even post the thermoplastic splints to her, so she can use them as reference & send them back with the gold splints.
I have EDS and you're one of the only people online that I can find who has it!! I'm also queer/trans so the experiences of already having my health overlooked by doctors also made my diagnosis hard!
Have you seen any videos of Jessica Kellgren-Fozard? She's disabled with EDS (and more) and she's queer AF! Just a recommendation if you haven't heard of her. 😊
had to response bc im also a queer trans guy w hEDS!!! heyyyy!! :D
Thank you for all your openness! I am so glad I found your channel. I also have EDS and it is wonderful to have someone being active about awareness. love ya
Such an interesting topic! I thought the braces were fashion, and I was already fascinated by them because they are really pretty, and I've never seen rings like them. But their function makes them even cooler! Thank you for sharing, I would never even have heard about EDS otherwise.
Thank you! I do adore them. I think there's this weird idea out there that medical aids need to be function-only and never pretty, and only ever come in black and tan, to be really useful... but medical aids can be such a part of our identity that I think they're even better when they're also super cool-looking! :D
Lol... I love that the first thing you address is that the splints are not for show...lol. I ordered 4 splints through etsy (rural and low specialists available), and I wore them out for the first time. Of course someone, 2 someone's immediately complimented me on my "jewelry " ..😁. I have now gotten use to those splints and ordered 4 more. Even through etsy, I'm up to almost $400 and I still have more splints I need. It is not a cheap endeavor, either path.
Thank you for your honesty in sharing your story and for encouraging others dealing with disability in the arts!
Thank you for always being so supportive! :)
Yes, my disability does limit how much I can do. I am bedridden since 15 and got a pain pump at 19. I stopped playing the guitar, drawing, etc. It's unfair how EDS affects everybody differently, most people are somewhat functional and I wish I wasn't envious.
Thank you so much for sharing your experience.
@@robinhahnsopran Thank you. I obviously don't meant to say you don't have struggles or don't suffer as much, all the experiences are valid. Thank you for taking the time to respond and for sharing a bit of what our world is with other people.
However it can be frustrating to see no representation from more severe EDS cases online, but it also makes a lot of sense because it's a lot of work many of us are unable to do. I've made my choice to not be a part of the EDS "zebra" community in the time being because it's bad for my mental health. It makes me very depressed to see other zebras and think "why am I not like that?" "I wish I was her", or just very angry when I see some things online. But that's okay too, those communites are really helpful and important for most people, so I am happy they exist.
I hope you're well and stay safe.
P.D there's no finger splints in Mexico, and shipping from etsy is so expensive :(
@@robinhahnsopran wait am i gonna have to stop drawing!
Thank you for sharing with us, Robin. Having studied, and studying with people with disabilities (mental and/or physical) has been an eye opener, and made me more understanding and patient with people.
So glad to hear that! The more we talk about it, the better the opera world will be as a whole :)
@@robinhahnsopran Agreed. Through openness and understanding, we can really go places. I guess we all have difficulties more or less. I need darkened glasses, and I'm face blind (yes, Clark Kent without glasses has me fooled).
So glad to find your page. As a fellow disabled performer (who also loves cats and tea)!
I thought they were just really cool rings! No idea they were braces for your EDS. Thanks for sharing and educating! :)
Thanks - I do believe medical aids can also be adorable! :D
I also have hypermobile EDS. Thanks for sharing your story.
Hugs from Brazil 🇧🇷🇧🇷
Other etsy cons: most don't come with dots. I started with etsy, and they didn't quite fit the fingers I ordered for correctly--but I also couldn't remember which was which. You will want to add them on yourself. I do love that on etsy you can get gold and even rose gold! and sparkle. also cats! Though gold will scratch more easily than silver. I like to wear my (slightly looser pair of) compression gloves over my splints quite often, particularly because it keeps rings I wear on adjacent fingers from clashing.
Oooh, I didn't realize the Etsy ones may not come with the dots, but that makes sense, given many of them are made of simple material like wire! Super useful. Thanks for sharing!
I wear my gloves over mine, too. It also keeps them from falling off when my fingers cool. (Mine aren't adjustable.)
Great. Very Informative. Thank You for taking the time to make this video.
Thank you for this light hearted and positive explanation xoxo
Shoulders dislocated in my sleep, roll over and wake up screaming. Yep. My life until age 20. Now I just basically don't sleep properly so I can constantly guard to avoid it. Fun! :D /sarcasm
Don't have a diagnosis, but yeah, definitely some sort of hypermobility.
Thank you for talking about how exhaustion effects your ability to do shows! Also been considering how much of my disability I should show while I reenter the job market. 😅
Gotta love being afraid to sleep because it hurts~ /also sarcasm
It's such a fine line to walk, to decide how much to share and when to do it! Being disabled is in itself a full-time job, just an unpaid and underappreciated one, not just managing the disability itself but also managing other peoples' expectations of the disability. I feel you. Sending good thoughts and lots of spoons for your work hunt!
@@robinhahnsopran Yuuup 🙃 But us with privileges can use our voices to improve conditions for ourselves and others! Thanks for the well wishes ❤️❤️
My shoulders once I fall asleep were horrible
Excellent video, and thank you for leaving the mild body horror to the end :P
Also, did I catch correctly that opera calls blocking 'traffic'? That's DELIGHTFUL
I wanted to make sure it was easily skippable for people who really didn't wanna see it :P And yep! It is indeed called "traffic", and I definitely totally imagine us all walking around the stage in tiny Flinstones cars powered by our feet!
@@robinhahnsopran Love it.
Yes! Medical aids can be pretty and fashionable!
I plan all my looks depending on whether I'm wearing rings or compression gloves now! :D
hEDS here too, posted in your 3rd video. I just tried that thumb twist and wrist tendon thing, umm yep…. New levels of weird I didn’t know about. I could do the others already.
Thank you for sharing, Robin! ❤️
They have some plastic ones on Amazon I've been using until my etsy ones arrive. Unfortunately due to covid, even getting an official diagnosis is dragging.
I've got 5 of these rings. Learnerd recently that all my fingers will need them (not the thumbs). So that's quite annoying. Eds sucks. Especially when you have multiple diseases.
How tight do you get these made? I am about to order some on Etsy, but I’m unsure how tight I want them. I don’t want them to fall off OR be uncomfortably tight!
I really like your channel. Thanks!!
I am SO glad I stumbled apon you! My daughter is 16, was diagnosed with HSD yesterday with further testing for EDS in the next few months. She is also bi, a musician (Attends an Arts High School for Vocal Performance, wants to go to college for Contempoary Musicianship - sings, plays guitar, bass and piano. Do you find the EDS has effected your vocal chords? And does your hands hurt when writing? If so, does the splints or compression gloves help? Thank you!!
I'm so glad she's getting the support fro you and from her medical team! :) Yes, it's definitely affected my voice - stabilizing the vocal apparatus is a little harder for me than for most people! But with work and some very specific focus on breath and posture, it's been something I can manage. As for writing: yes, absolutely! My hands get sore so fast when writing. I type when I can, and often when I know I'm going to need to do a lot of it, I double-layer the compression gloves on top of the rings, which helps a lot!
Awesome topic. Thanks for sharing 💗
Thanks for the support!
Is there a soft shoulder brace or some kind of compression garment you can wear in your sleep to prevent shoulder dislocations?
Thanks so much for this video. And for having real, human-composed captions!
I haven't yet found one I'm brave enough to try - I'm a mover in my sleep, which is sort of the problem, but it also means a lot of restricting aids are just things I find really uncomfortable at night! :( Still tentatively looking into it, though. I know I need a better solution than "Oh, it's fine, it doesn't happen EVERY night". xD
So glad you liked it! Having captions is super important. :)
@@robinhahnsopran Yeah I can understand why Ioose clothing is comfy at night but waaaay-loose joints do make you wake up screaming, so maybe worth considering ;)
Also I'm glad your captions are so great because I shared your video with an amazing TH-camr that I highly recommend (who also has EDS and is deaf), Jessica Kellgren-Fozard.
@@robinhahnsopran P.S. after watching your channel intro video, I'll add that other reasons to subscribe to Jessica Kellgren-Fozard are that you may also like her series of historical profiles of queer and/or disabled people, videos about representation in the media, about disability and chronic illness. And the adorable content with her and her wife. Seriously.
@@resourceress7 Oh, wow - she's one of my favourites, too! :) I SO appreciate that when you see my content, you think of her! What are your favourite profiles she's done so far? I'm partial to Julie D'Aubigny, for clear opera-related reasons! ✨✨
I have a mattress with a super squishy topper, it helps some.
Just wondering, I'm assuming you can play piano or some other instrument. Does that work with your hands?
Great video, very informative. 🐈
Hi! You're right, it does make me sore to play too much, so I tend not to, and avoid playing as much as I can when teaching or learning new repertoire. It's like typing, for me - it's a good idea to wear compression gloves while playing, and then wear lots of support afterwards! :) Thanks for asking! Glad you liked it!
Thank you for this video! Very informative :)
I'm so glad you like it! I always hope to post things that are both educational and fun. :)
@@robinhahnsopran consider this a success!
thank you for the video it was amazing!
Thank you so much!
Love you!
Love you too, Janice! :)
👍🏼🌷
God bless you
That sounds painful 😢