Pointe Shoe Fitting a Dancer with a Connective Tissue Disorder (CRAZY HYPERMOBILE)
ฝัง
- เผยแพร่เมื่อ 7 ม.ค. 2020
- She might be the most flexible woman I've ever fitted. Watch me fit a dancer with Ehlers-Danlos Syndrome (EDS). A genetic connective tissue disorders characterized by unstable, hypermobile joints, loose, “stretchy” skin, and fragile tissues.
For more information on EDS: www.ehlers-danlos.com/what-is...
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I have the same thing. it sucks. everyones like "omg you're so lucky you're flexible" and I'm like "NO! I'm an over cooked, floppy pool-noodle with no stability, and I sprain my ankles every week!!!"
This is just the best description I've ever heard or read about eds
Same!
Same I'm a dancer but I never wanted to do ballet because my joints yeet out of place
We need to make a mix of you and me and we'd be a good dancer, I was born with nothing so if you took the two of us and mixed our flexiblity we'd make a lovely dancer
same, its annoying lol
EDS isn’t as rare as most think it is. It’s just rarely diagnosed sadly
Some types are rare but hEDS and HSD aren't rare.
K Williams I know tons of people with EDS. It’s super horrible for people... wish people would spend more time educating themselves on the various illnesses. Doesn’t even need to know EVERYTHING but some basic understanding of things.
You happen to be correct in that it is extremely under diagnosed. It is really unfortunate but that is why I have a lot of videos coming up on my channel about signs of EDS and things my doctors ignored until it was too late for a long of things.
It’s heartbreaking everything ppl with EDS have to go through with doctors and insurance it’s a constant battle. The amount of times my best friend has cried over doctors not believing her, or even refusing to do testing.
@@ecologist_to_be Plus there are about a gazillion varieties.
I was diagnosed with Ehlers-Danlos Syndrome while I was 14 and at SAB. I worked closely with physical therapists and an EDS specialist and still dance professionally 22 years later. You can do ballet with EDS but you need to be so careful so as not to injure your joints from dis or subluxations. Best of luck to all dancers out there with EDS!
My first and only year of point I rolled over my left ankle twice in the year, and keep re-injuring it, I still do other kinds of dance but sadly point seems to be off the table for me.
It definitely seems like one of those things that you should start early if you are going to do it. A lot of us seem to have a lot of instability and proprioception issues and injuries by puberty, but it seems that those who start well before that point have had the chance to build the correct muscles and form. It was the same for me in gymnastics
I also have EDS and was diagnosed at 13 I don’t do dance, but I did aerial silks and can no longer do is sadly due to pain.
I am a guy with EDS as well, I took up pole-dancing to keep my muscles in a good shape and that has helped me hold my joints where they should be ...
Well ... for the most part ...
Yes, that is me in the profile pic
hi, I just realized I might have it, can I ask how you got diagnosed? I can't afford to genetic testing:(
I love that you feature different body types in your fittings! It's super useful, especially in ballet where most dancers look the same :)
Thx for commenting this because I am one of the girls that don’t have the “perfect” dance body
I practically begged her to do this because about 30% of my dancers look like this dancer!
No, they don't look the same. Every dancer is unique. Stop calling slim people "the same"
@@ewatokarz577 True.
and you just made it awkward by acknowledging it.
I always get weird looks when I do ballet because I’m a bigger girl. I went in a for shoe fitting at my local dance store and they kept giving me weird looks. The body positivity in the video is so great. I mean, she really is just another ballet dancer. I stopped getting fitting for things when my teacher bought me a costume seven sizes too large to mock me, and she did a fitting. This has really inspired me. Thank you!
😧
Super late reply but oh my gosh that’s awful!!!! I have a girl in my adult class that is bigger and is one of the best in there!!! And carries herself with such grace! I hope you are still dancing.
I am so so encouraged to see someone fitting an EDS patient correctly and really taking the time to consider all of the things that come into play with a connective tissue disorder. I especially loved how much attention you paid to the client and her physical and PSYCHOLOGICAL comfort. While the shoe may fit, the dancer also needs to feel confident in it. We already have overthink every movement we make to make sure we are in safe parameters, The last thing she needs is to be worrying about is her shoe collapsing or flying off.
As someone diagnosed with juvenile rheumatoid arthritis, I never thought I would be able to dance, ever. I never saw any dancers with chronic illnesses and this perpetuated this thought. In the New Year I will finally be able to attend dance class for the first time ever and I am so excited! Thank you for the encouragement!💫💫
That's so exciting for you! I had JRA at ten and I did ballet, jazz, hip hop, volleyball, basketball and tennis. You can do anything you set your mind on!!! Just keep pushing yourself and listen to your body :)
@@hilaryfarren7878 Thank you so much for sharing this! Very inspiring🌼
i have eds and i just started dancing and its really fun
Omg I do too!!!! Honestly it sucks but we can get through!!! I hope it’s not so bad for u.
I pray that she’s able to continue dancing her whole life. I’m 45, also have EDS, and am virtually bedridden. I have a number of additional illnesses that have contributed to my disability, however. Whenever I find a fellow zebra pushing the boundaries of what’s possible, I wish them all the luck, and good vibes in the universe that they can continue forever.
Hi, I'm a zebra too and wasn't diagnosed till late 30's after fighting the specialists and not giving up. I danced from age 3 but unfortunately had to stop at 21 as I became too ill to continue. Eds robbed me of my 1st love and I was heartbroken and still am. It's so important to keep pushing and listen to your body. I now have a daughter who is following my dream (and hers) but at 13 she is showing signs of eds sadly, but I'm keeping a close eye on her and know what's good n not good. I am so pleased this lovely lady is still able to do what makes her happy. Stay zebra strong Hun and stay safe too ❤️
Bedridden zebra here too. I didn’t get diagnosed until last year. I had too many years of showing off my flexibility. My 3 daughters have now.
I tell people all the time, yeah, it's great in your teens and 20's, but when you enter your 30' and especially your 40's, It's GOING to catch up with you. You have to be so, so careful not to damage your joints, and have to see a few MORE doctors to keep you on track as far as treating and preventing injuries. Knowing what I know now, I wouldn't do it.
21 and have been bedridden before and am a wheelchair user
@@popkinsco6074 And isn’t it just ridiculous that doctors think that EDS is “rare” aka zebra but then there are all these people here commenting “I have EDS too!!”.
I thinks they’re taught that X is rare in medical school and they just prate the party line, and then it takes a few decades for the teaching to catch up with REALITY!
I really appreciate that you feature diverse clients. I was recently diagnosed with EDS as well and (thanks to also having an eating disorder) have really had a hard time with the fact that I don’t fit the stereotypical EDS body type and feeling like a fraud because I am in a bigger body. Even though I am not a dancer, this video was incredibly validating and made me feel much less alone. Thank you.
Elle Ray you are never alone! I talk more in depth about EDS on my channel and we are making a series to talk about how it effects my every day life and activities! There is no set EDs body type and there is no right or wrong to feel about your diagnosis. You are not alone! Feel free to DM me on Instagram if you have any questions about anything! :)
I'm an EDSer also with a large body type! You are definitely not alone.
hEDS here with an eating disorder as well but the other end so I'm very small and it's not good either because we really need all that muscle strength. All my love, we come in a lot of different sizes
I am a thick and fluffy zebra too!
my physical therapist actually told me that she had only seen heavier people with EDS until my mother and i saw her for the first time and she has worked with EDS patients for a long long time!
You fitted me with EDS twice around 6 years ago! I actually had to stop dancing on pointe because each time I took off my pointe shoes, by big toe would be dislocated. It actually took so much damage that the connective tissue in my big toe ossified and now it doesn’t move. Thanks EDS🤣
I totally feel the fear of letting go of the barre, I always felt as if I would roll over. I remember you being very shocked at my knee hyperextension but I didn’t tell you I was diagnosed at the time as I didn’t really tell anyone which was probably a bad idea in hindsight😕
"The human body isn't made to do this."
It's always refreshing to hear someone in the field admit it.
Love your guest. She is beautiful, fun and engaging. Thanks for sharing!
I love her too. So positive and inspiring
The Pointe Shop I really enjoyed this video, you seemed so comfortable with your guest!
I was thinking the same! She’s truly amazing and inspirational ♥️✨
I started pointe at 11 and kept it up until I graduated high school.
I was diagnosed with EDS at 21, but I wish I knew sooner. I was constantly struggling immensely with pointe work, no matter how hard I tried, and I just kept watching fellow classmates fly by me in how quickly they improved. I really beat myself up about it.
If only I had known…
I’m so glad it’s getting more awareness now!
It was so lovely to hear comments about how the shoe feels from the dancer. I keep meaning to ask if we can get more "reactions". I know some dancers are young and may not feel comfortable talking, but when someone can talk, it definitely adds to the experience of watching and appreciating how different shoes feel to the actual dancer.
Loved seeing a curvy dancer too, who even has a medical condition where she might be advised not to dance, but she just HAS to do it! :)
Keep up the excellent work!
I'm also a dancer with Eds and it's so nice to see you understand what it is, I have to spend hours doing strength work and physiotherapy just so I can continue dancing because I love it so much but its just so difficult and dangerous when your body doesn't really agree with dance 😂😂❤️❤️
What are some good beginner exercises I could do? I'm not a dancer but I've always naturally been hyperflexible and it's hurting my joints.
I have this!! I was not diagnosed until after I had my miracle baby at 40...and my joints started CRUMBLING. I just have a rare form of hypermobilty...not eds. I am now bone in bone in 4 joints. I studied dance through the Gotta Dance programs in upstate New York as a teen. The ONLY person that suspected something was wrong with my joints...was my ballet instructor..she was former chorus dancer for NYC ballet. I just did not "look right" to her. Then I was taken off the scouting list after I suffered a "catastrpohic" dance injury. ..I tore all the muscles and tendons in my right hip...while doing grand jete. All of my docs tell me...the reason I still am walking...is because of dance..is because I was labeled "athletic" in my med records. I just saw my foot doc. ..he
I told him, that when I started getting this hammertoed, I started doing my toe exercises from ballet...he said "it's working" so every single day I stretch my feet and toes and do isometric with my toes. Dance is life...where it takes, it also gives. For anyone watching this www.hypermobility.org. I was born with a double hernia....I was one in 10 million at birth. I could do INSANE things with my body. Love you!!!
I love this story so much
I was doing my foot excersises the other day, my 11 year old son asked "momma, what are you doing" i replied "trying to play invisable piano with my toes"
@@Thefireslove My mother can write with her toes! I do my toes exercises daily too because it really helps you strengthen the whole foot and tendons and keep them going for longer! Great job. Hypermobility is difficult and as a person with EDS I try to make sure the students teach or see in class know about this disease and what it can do to your body.
I used to be able to write with my toes!!
I am now VERY arthtritic. I have ground off over an inch of bone of my left shoulder. When I was 43, a doc who saw my xrays in the hall right outside my room, the day I was diagnosed said "wow, this 90 year old woman must have a hard time.". The other docs said " um, she is 43." Without muscles trained by dance, without the attitude toawrds pain Dance gives you, i would be in deep shit...and already wheelchair bound. My knees are sliding apart, i know my days of walking are limited...but I will NOT go quietly...dance teaches us that too.
I just want to thank you and Sarah for sharing her disease with viewers. I was diagnosed with Fibromyalgia nine years ago but I also have high flexibility or hyper mobility. And I’ve often wondered if there is something more going on. And I just want to say, Sarah you are very brave! keep at it girl!❤
autoimmune disorders and eds have a lot of comorbidities so definitely check it out! My mom has fibro and my sister has joint hypermobility syndrome and likely some autoimmune issue. the trick is figuring out which one
The part where she said, "If you guys think I sound sexy, it's because I got sick" got me. I was laughing so hard!
So cool to see you fit a bigger dancer as well! Thank you both!
Agree! Thank you so much!
I’m a plus size dancer. I have to be careful because of hyper mobility too!!
She should make a channel. I would be a watcher for sure!!!!!
Catherine Kendrick she does, it’s Sara Jane struggles and it’s linked in the description. There’s not really any dance related content though :)
RageQuitGirl I’m currently working on a private lesson video breaking in my pointe shoes as well as what I have to think about and do when I dance to stay safe!
I have EDS, and thank you for using your platform and bringing this to the forefront. EDS is awfully painful, and super crazy! I love that’s she showed the EDS gang sign!!
I’m 13 and I have EDS as well! I have always looked up to ballerinas my entire life and I loved the thought of dancing but I always thought because of my disability I would never be able to! I love that you feature different types of people with different types of struggles! I have EDS type 3 with a lot of other disorders and diseases so it’s always nice to see someone different like me!
Omg, I would LOVE to get my pointe shoes fitted at the pointe shop. One day you guys should totally do a room tour of the pointe shop showroom! That would be so fun!
Me too! I would love to have her fit me properly, I have gone through so many pointe shoes that are not well fitted for me... ugh.
I have EDS and have done ballet for almost 22 years. It’s so difficult but it’s so lovely to see someone else with this condition who also loves ballet!
Ballet is hard but beautiful as well. I never thought before I'm going say something like that but I love ballet. I love ballet outfits. It's beautiful
This made me smile so much. I actually quit dance when I was 9 BECAUSE I had undiagnosed EDS and my teacher didn’t understand that and had no idea how to teach me.
7 years of colorguard later I did a number on all my joints because of it and STILL had no idea what was wrong.
13 knee dislocations, 4 surgeries on my left leg, and an actual diagnosis later....I desperately want to get back into dance. And this gives me hope for one day trying again (after I’ve recovered from this roller skating injury 🤦🏼♀️)
I am thrilled to see an EDS dancer featured! I am also diagnosed with this and used to dance but in the past several years my health has taken me out of anything physical. All the co-morbidities (gastroparesis, dysautonomia etc.) really struck me hard so I know have 2 feeding tubes. My goal is to get back to some dance if a safe way because I miss it so very much!
I wish you all the best on your healing journey and hope that you will get to a point where you can get back to doing activities that you love. 💞
This was a really well done video. I have classical EDS and didn’t get diagnosed until I was in my 20s. A lot of women especially get told their joint pain and other issues growing up are no big deal. There usually is a reason behind it. And finding that reason gives you the ability to manage it and stay active
If you find it early enough..
I love your guest! She is super bubbly and interesting. I also appreciate that she took a break from dancing and went back as more of an adult dancer (not sure how old she is here, but at least 18).
I am actually 22! I stopped at 18 and then came back around 21! Sometimes you need a break from things to realize what you miss the most. :)
I have EDS, too. So great to see, that she can dance! I can‘t because of the amount of pain I am in on a daily basis. I am working out at a special gym.
So great to see so many different women at this show!
I have EDS as well and it served me well back when I was a competitive gymnast because I could do things other gymnasts couldn't, but as an adult I'm left with a lot of pain...
One thing about having EDS is that I can basically play jump rope with my arms; a party trick that causes people's jaws to drop off of their faces. 😲
It's pretty cool!👍
Finally!!! I have h-eds and just got diagnosed a few months ago, and I am so so happy that this finally happened!! Thanks
I've always had ppl comment on how flexible I am, but it's no where Near your level of flexibility!! Great that you're finding a way to do what you love👍🏾
Love that :)
Love a dancer who is still going even with some limitations
I have zero ballet or dance background, and yet I love watching your videos!
So informative and love hearing your voice... sick or not lol
My daughter has Ehlers-Danlos syndrome as well, Ballet has saved her joints and her childhood. Now she is stable and Very strong. She is almost 11, and dancing eliteballet here in Denmark.
She is pre-pointe and We are very happy to have found this video for when We are going to get her first pointe shoes 💕
I love how positive and encouraging Josephine is to every dancer she fits, and all of us who are watching! 💗
Omg i love this!! I have hyper mobility everywhere and this makes me so happy to see a plus size dancer and for her to have a connective tissue disease, and be a pointe dancer. I’ve been waiting to dive into pointe because I’m overweight. This makes me feel so much better.
Thank you so much for doing this video! I started ballet at 26 and had to quit three times over as many years after only a few classes due to pain and injury. I finally got diagnosed with EDS-ht and now that I'm able to better know what's causing the pain I can fix myself and I've been dancing longer than ever now! It also helps me with strength and stability. Thank you so much for bringing attention to this disease. This video will be great to have whenever I do go up on point. :)
As a ballet dancer with hyper-mobile Ehlers Danlos syndrome I love the exposure for dancers with disabilities. Every dancer has different needs and it’s important for everyone to understand that no two cases of H-EDS are exactly the same. ☺️
My parents struggled to keep all five of their children in school shoes so extracurricular footwear was never a remote possibility. I find myself fascinated with the mechanics of the ballet shoe mainly due to your presentation and your kindness and concern for all of your clients. It is always a joy to watch someone who truly loves their work.
I’m absolutely loving seeing fellow EDsers out there in the TH-cam world (and comments)! Best of luck in your dancing! Stay safe! It’s fantastic that that is something you are able to do and have such a knowledgeable fitter. Obviously its a big risk, but it seems like it’s really worth it in your lifestyle. Keep up being awesome! Thanks for sharing your story!
Thank you so much! I absolutely love watching your vlogs on my private account! I would love to contact you and be able to maybe film a skype interview comparing and showing how different EDS can present! DM me on instagram at Sarajanestruggles if you are!
I have EDS but have always wanted to dance. I'm still on the fence, since I also have chronic fatigue syndrome, but this video and the beautiful dancer featured has given me some hope.
I've also loved seeing the comments section, so many other people with EDS! It's nice to be reminded that I'm not alone 😂 Thank you so much 💖💖💖
I’m constantly hyperextending my lower extremities. I have to constantly be aware of how I’m standing because my joints are trashed and I’m full of arthritis. Her feet are beautiful ❤️
I have EDS and POTS (they commonly co-occur). Dancer for over 30 years, just now getting refitted for pointe shoes after my diagnosis for the first time. I fall over my box like crazy too, but Suffolks last a decent amount of time for me.
Thank you for doing this and listening to us! The special case scenarios! Thank you!
Thank you for posting this! I battled my hyper mobility en pointe, for so long. We require twice the effort to strengthen the natural flexibility. Dance is wonderful for people on the hyper mobility spectrum, because we're naturally clumsy, hurling our spaghetti selves through life. At 45, ballet is still my favorite PT. If I'm not dancing, I'm so clumsy.
The turnout, beautiful. Extension, gorgeous. But, the floor is strong with us. So if you're young, hyper mobile, and dancing; keep doing it!
4 decades later, it's still a necessary tool, in my life with hypermobility.
Thank you so much for this video! I love ballet and have EDS. I take great courage from Sara’s words.
This is really lovely to see and I'm so happy for her to still be dancing! I wasn't diagnosed with EDS until much later afterward, but i had to give up ballet when I started pointe training because of my hyper mobility, i just kept injuring myself.
So glad to see other people who dance with EDS 🥰 Thank you for covering this and bringing awareness! I always had such problems as a child dancing because of EDS
I have a connective tissue disease as well. I've been watching a lot of ballet training videos to learn how to take care of my body in a way no doctor has been willing to help with. I dreamed of being a ballerina but the pain was too much to bear on top of a ballerina's usual pain. This search is what accidentally lead me to your videos which I've been watching to find out how to get proper shoes for my own feet
Thank you for sharing this! I also have EDS and struggled finding “the perfect” pointe shoe. I danced growing up, now teach, and I still dance en pointe. Many hyper-mobile people end up in dance, and talking to an orthopedist or physio is highly recommended.
I appreciate how you both stressed strength training, and how the “look” isn’t always what we need to focus on.
I also go through shoes quickly, and have found my current love in Gaynor Minden’s. I appreciate how the wear is fairly stable for the life of the shoe.
Keep the great lessons coming Josephine! You’re an amazing resource for the dance community! 💜
I danced from childhood until after my 3rd child was born in 1982. I had very strong arches and ankles and kept breaking the shank. I used to order a shoe with a double shank and the would last me 3-4 weeks. I feel for the dancer and celebrate her determination to dance no matter what.
love that :) I hope you're still dancing
Sadly, as I have gotten older, my body just wore out. I am somewhat bedridden (in pain all the time). I am so glad that I spent all those years dancing. I still dance in my mind all the time. P.s. I am going to be 69...
Without a doubt this is my favorite TH-cam channel. Josephine is so informative and such a delight.
I have been wanting to get back into ballet, but have Marfan's Syndrome, also a connective-issue disorder similar to EDS. It's interesting to see others with connective tissue disorders into ballet.
after seeing this video and researching more abt EDS afterwards, i brought it up with my doctors and i finally got diagnosed a couple of months ago after 17 years of pain that couldn’t be explained! thank u❤️
Oh my, what a lovely and relatable video. I was diagnosed with Hypermobility Syndrome at age 12 (4 years ago) and I know how hard it can be and especially for someone with EDS which is worse than HMS.
And yes!!! Finally someone said it!! We MUST excercise and keep those muscles strong!!
I have always dreamt of dancing, maybe not ballet specifically, but it's something I truly love. But it has been hard for me because I've struggled with chronic knee pain and my HMS for many years, and nothing really seems to work. Nonetheless, I am thankful to be able to live a bit more freely again and I will keep on believing in my dreams.
Thank you for this video 👐
I love watching Simon and Martina here on TH-cam. Martina has EDS as well. She has a few videos dedicated to it and shows the struggles and how she gets through it. She also has amazing build a ladder merch for everyone who has any sort of struggle in life!
HeartAndSeoul I love Simon and Martina! #buildaladder
Sara Jane Struggles me too! She’s so inspirational and strong
I am starting ballet and am also this hyper extendable! It's really awesome seeing this video to help me understand what I need to do to stay safe!
I love this video! i dont have EDS as far as i know but i do have extreme hyper mobility in the lower half of my body (even my toes its real weird) and I really related to the idea of feeling like you are going to end up going over the box all the time.
So nice to see someone else with EDS with a love of dance. And explain issues i feel i used to have when i danced
Would love to see a follow up video with Sara and how she gets on with these new shoes!!
Brind Music Nerd I am trying to facilitate the next video with my teacher and a private pointe session to show the shoes in action!
The drag queen Yvie Oddly also has Ehlers-Danlos and has been very open and vocal about living with it. Props to you all for using your voices to educate and spread awareness!
Wow I almost felt like I was watching a video of me! I also have EDS and danced when I was little. I tried getting back into dance in high school, but my knees were subluxing/dislocating constantly, causing falls, etc. It was a no-go, even though my heart ached to keep trying. Good on her that she is still doing it.
I have EDS and have been trying to get a pointe fitting, because I want to incorporate pointe into my work as a male dancer. This video gives me a lot of hope, and a lot of things to talk to my fitter about, because my knees and feet do the same things that Sara's does. Thank you so much for featuring her and her fitting!
If you ever have questions on how I try to keep my shoes lasting longer or tricks like that, feel free to DM me on instagram because there are a few places that shoes wear out first on me and I wish I would have known when I started :)
You truly have no idea how amazing this video was for me! I’ve lived with EDS for DECADES and had absolutely NO IDEA until I was finally diagnosed by one of my husband’s colleagues ( an orthopedic surgeon) sadly a few months after my BFF passed away from EDS. I’ve been dancing and teaching for year’s, my nieces do ballet, and I’ve struggled to find a pointe shoe that doesn’t give me ALL the exact same problems this woman had. Thank you again for taking the time to work with and share these stories. You really touch a lot of lives this way. I’d love to know what shoe this was exactly because I’d like to look into it more.
It’s so cool to see other people with EDS doing what they love💓.
I had to give dance up because my EDS was to bad ☹️
I have EDS also and this video was so encouraging! I'm not even a dancer but it was interesting to hear about the specifics for an extra-bendy person.
I’m currently waiting to see a specialist & I’m going to mention this. I started ballet when I was 3, finished because of really bad knees at 14 but 30 years later I’m still just as flexible, my shoulder dislocates, and it even is concerning my PT. It was just like watching what my body does, apart from my thumbs, but that’s because my knuckles are also screwed so the just pop out a little. At the moment I’ve got the diagnosis of fibromyalgia and ME. So yes, super grateful I found this video
Its so nice to see a dancer with hypermobility like me ❤
So awesome to see a dancer with EDS! I’m still working on walking without subluxing my hips, but I would love to dance one day!
I had lessons when I was in elementary school and I never went further than a years worth of lessons, but seeing that yes ballet dancers come in every shape and form makes me wish I had continued. I always felt out of place because I wasn’t a tiny little girl and for sure not the right color, or so I thought, to be in ballet... but seeing this makes me want to cry..
I'm so glad that you were able to help her feel safe doing something she loves.
From the King Kogi channel on TH-cam l have been introduced to EDS. I admire Sara for keeping the dance discipline going in spite of this condition. You go girl!!
This is so cool! I have EDS and did ballet for 13 years before I had to stop because my ankles became too unstable.
Fellow EDSer here and used to do ballet, gymnastics etc. Great to include all types of dancers and flexibility!
Oh my gosh I have EDS! Thank you so much for making this video!
I laughed out loud when you said "If you guys think I sound sexy today, I got sick!" Many years ago I had to have my second Thyroid surgery to remove the gland due to a goiter (NO cancer, thank god, just born with an under-active gland that finally gave out on me.) Anyway, I was home recuperating about two weeks in and a friend from church called to touch base with me. When I answered she said, "Oooh, Tara, you've got your sexy voice working." It made me laugh out loud at that time because for all this woman was a DEACON'S WIFE, she was one of those sorts who never truly grows old or rigid and knows how to have a good time. So thank you for bringing back a delightfully pleasant memory for me!
My friend has this syndrome too. She is 17 now, is in a wheelchair, cannot do anything by herself and has a ton of other health issues. She used to be a very good dacer and can't do anything now. It's really sad because up until this year (she has had it for about 6 years) and not a single doctor took it serious. She was even taken from her parent for a while because authorities thought the parents where behind everything and that she had a psychological problem. Finally they know what the cause for everything is even though it probably won't ever get better.
Not gonna lie, I am a big fan of Marlene Dietrich so to hear a girl with a husky voice, I like it. :-)
Meanwhile, I'm a nursing major but I also study and enjoy multi cultural traditional dance, so I really find the dancers and this topic highly fascinating. Thank you ladies!
🙋🏼♀️ fellow Zebra here! I really want to start dancing again. Seeing you makes me feel like it’s not impossible anymore!
you should try to fit Kathryn Morgan from Miami city ballet !!!!! i would love to see thaaaaat !!!
ithink it would be super coool !!!!
I worked for orthopaedic surgeons for years, both trauma and sports surgeons. I think they'd love her. I saw her knee hyperextension while she was just sitting there with extended legs! They admire athletes and people who confront limitations and do dangerous things involving calculated risks, at the same time as they worry about you... LOL. Their job, the best of them, is to help keep you doing what you love to do. Skiing, skateboarding, runners, ballet... they like you.
i was diagnosed with eds when i was very young and the older i got the more severe it gets (i’m only 15 now) and i was told that i wasn’t allowed to dance anymore as i could permanently damage myself, and as my friends are still dancing it’s really sad for me to see a passion of mine go down the drain, but this gives me hope that one day i might be able to dance again :) x
PSA FOR PEOPLE WITH EDS!
remember that just because this woman is able to do ballet doesn’t necissarily mean that you will be able to. with all the different types of EDS and with every person being affected differently by the disease, everything is individual and you have to live by the rules set by your own body. also remember that the possibility of permanently injuring yourself and destroying your body is very high with these ”extreme” sports. i’m not writing this comment to try and crush somebody’s dreams or to tell someone else what they should do with their body, but i think it’s important to know and understand the risks. it’s easy to think that you can do something if you just want it bad enough but that’s not the reality for many people.
i was a gymnast for most of my childhood and early teens (i was diagnosed with a very aggressive form of arthritis at 13 and then got my EDS diagnosis at 17) and it has completely wrecked my body and i’m now mostly bedridden and wheelchair bound. if i could take it all back i would in a heartbeat. i’m not trying to scare anyone but this is my reality and i think it’s important that you know the ”worst case scenario” and get to weigh all of your options.
also, never feel bad about yourself because someone with a similar condition to yours can do things that you can’t! you’re amazing.
Sara you’re amazing! Thanks for this info & thanks for this fitting showcase! Blessings to the both of you! 🙏❤️
This was inspiring!
Ive had a breakthrough. I love this channel because of the science. Its a science fitting pointe shoes. Like a Doctor you have to listen, make notes, go through the different brands and then try out. Just like trying out different painkillers for backache.Voila!
I thought I might have eds cos I have those hyperflexible knees too, but not the skin or wrists. Then we figured out that my brother does have it! He's dislocated his shoulder very often and had knee issues. I hope it helps him to be more safe ❤ beautiful dancer and great info 🙏🏻
I just found this channel a couple days ago and I'm so happy I did! I have EDS and I thought ballet might be off the table for me because of my hypermobility.
I have EDS too! People say it’s rare but I’ve seen/heard of a lot of people that have it! So cool!
WOW!!! I cannot believe how many people here actually have EDS. Outside of other family members, I’ve never met another person with EDS. I often have to explain it to doctors. I feel a lot less alone (in regards to EDS) right now.
I’m not even a dancer but I love these videos! So interesting!!
I have hEDS too and used to be a dancer. I love hearing other people's stories. ❤️
Wow! This was my favorite one.
I do ballet and I have hEDS too! Happy to see this video ♡
This video helped me get my dx. It was the second to the last nudge I needed to pursue it. Thank you ❤️
My sister and I both have Ehlers. She doesnt dance but i do or did. My dance teacher used say i have 'pencil feet'. Yes extremely flexible. Makes for beautiful lines but now that Im older i have some discomfort/pain. But i still wear my pointe shoes for fun. I no longer dance but still they make me feel so beautiful. Its good to see this young lady overcome her issues with hyper-flexibilty!
Thank you!
You did an Amazing job finding the well fit/ firm hold point shoe for her. And the lady I did massage with was very hyper flexible too. God bless her
This is brilliant. When I was a young dancer, there was no one who could analyze every aspect of a dancer and foot to provide the perfect pointe shoe. There was only one type and we went by size.
Never thought I’d see another EDS warrior on pointe! 🤍🖤🤍 🦓
I love your videos so much and all the people you bring into them
EDS has a lot of comorbidities including POTS (Postural Orthostatic Tachycardia Syndrome) (if you pass out or your heart races when you change positions) and there are multiple kinds of hypermobile syndromes out there.