Pointe Shoe Fitting a Dancer with a Connective Tissue Disorder (CRAZY HYPERMOBILE)

[@alaskaballetdancer28]

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!

[@Ellie-vc5ow]

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.

[@christinadoherty3212]

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

[@EvieSmith-ix9mh]

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.

[@NaeKid]

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

[@agnieszkakalata1623]

hi, I just realized I might have it, can I ask how you got diagnosed? I can't afford to genetic testing:(

[@SaltySugarPlum]

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!!!"

[@rosa-xo2ei]

This is just the best description I've ever heard or read about eds

[@shespeex8413]

Same!

[@chloearthur9589]

Same I'm a dancer but I never wanted to do ballet because my joints yeet out of place

[@pineapplekelsey5951]

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

[@maryg411]

same, its annoying lol

[@aliceverville9400]

I love that you feature different body types in your fittings! It's super useful, especially in ballet where most dancers look the same :)

[@rx_oreo9098]

Thx for commenting this because I am one of the girls that don’t have the “perfect” dance body

[@fredrika27]

I practically begged her to do this because about 30% of my dancers look like this dancer!

[@princessroxyvincenzo5602]

@@ewatokarz577 True.

[@billyt8868]

and you just made it awkward by acknowledging it.

[@NovaLeeTV]

Emma Phillips Same here

[@rebeccakalichman7993]

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!

[@howcanikeepfromsinging]

😧

[@Anonymous-lx8ep]

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.

[@christinadoherty3212]

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.

[@TheMetatronGirl]

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.

[@popkinsco6074]

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 ❤️

[@lillyrose3545]

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.

[@Jersey.D3vil201]

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.

[@livewellwitheds6885]

21 and have been bedridden before and am a wheelchair user

[@GrumpyOldFart2]

@@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!

[@michaelekemp6679]

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!💫💫

[@hilaryfarren7878]

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 :)

[@michaelekemp6679]

@@hilaryfarren7878 Thank you so much for sharing this! Very inspiring🌼

[@ChrisViCrows]

i have eds and i just started dancing and its really fun

[@a_little_bit_of_marissa3310]

Omg I do too!!!! Honestly it sucks but we can get through!!! I hope it’s not so bad for u.

[@marymiller8370]

Love your guest. She is beautiful, fun and engaging. Thanks for sharing!

[@ThePointeShop]

I love her too. So positive and inspiring

[@DestinyHopeLou]

The Pointe Shop I really enjoyed this video, you seemed so comfortable with your guest!

[@PEACEinYESHUA-oj7vc1pk7w]

I was thinking the same! She’s truly amazing and inspirational ♥️✨

[@elleray9293]

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.

[@sarajanestruggles5247]

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! :)

[@helenasample4872]

I'm an EDSer also with a large body type! You are definitely not alone.

[@romycullen17]

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

[@majesticallyawkward1977]

I am a thick and fluffy zebra too!

[@queenjeski591]

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!

[@greeneyes12346]

EDS isn’t as rare as most think it is. It’s just rarely diagnosed sadly

[@ecologist_to_be]

Some types are rare but hEDS and HSD aren't rare.

[@ReadObituaries]

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.

[@sarajanestruggles5247]

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.

[@samanthadelgado8471]

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.

[@Talentedtadpole]

@@ecologist_to_be Plus there are about a gazillion varieties.

[@oinkpig11]

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😕

[@paulahills9546]

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!

[@hannahdouglas1842]

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 😂😂❤️❤️

[@yaelifembotnikova]

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.

[@loveanddreambig]

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!

[@kbmls3]

"The human body isn't made to do this." It's always refreshing to hear someone in the field admit it.

[@amandacoman6778]

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!❤

[@tempest2711]

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

[@AllyssaButhmann]

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!!

[@deniseeliza1]

So cool to see you fit a bigger dancer as well! Thank you both!

[@nesyahhkopans]

Agree! Thank you so much!

[@catherinekendrick3670]

I’m a plus size dancer. I have to be careful because of hyper mobility too!!

[@catherinekendrick3670]

She should make a channel. I would be a watcher for sure!!!!!

[@RageQuitGirlOfficial]

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 :)

[@sarajanestruggles5247]

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!

[@bsavvy4]

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!

[@sngray11]

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. 💞

[@thetrios2155]

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!

[@robinbird6279]

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.

[@amygunn]

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!

[@princessroxyvincenzo5602]

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

[@puppielove591]

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

[@saramoni4748]

If you find it early enough..

[@Thefireslove]

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!!!

[@ThePointeShop]

I love this story so much

[@Thefireslove]

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"

[@tamberjune]

@@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.

[@Thefireslove]

I used to be able to write with my toes!!

[@Thefireslove]

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.

[@owlsquad889]

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!

[@cf8595]

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).

[@sarajanestruggles5247]

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. :)

[@caracannon6138]

Finally!!! I have h-eds and just got diagnosed a few months ago, and I am so so happy that this finally happened!! Thanks

[@LauraBader91]

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!

[@cassiestentz3862]

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 🤦🏼‍♀️)

[@nettysmith2894]

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

[@rockermystic]

I love how positive and encouraging Josephine is to every dancer she fits, and all of us who are watching! 💗

[@Melon_Cloud]

2 years late to the party 😂. I am not diagnosed with EDS. But I am very hypermobile. This made me prone to injuries during my dance career (not ballet, though I LOVE ballet). Which made me injure myself quite a few times when I was very young. And at 16 was diagnosed with CRPS. Which for me means (there are different degrees of severity) all nerve pains (24/7) that exist in the affected limb(s) including pain of touch. Everything that touches my left lower leg and foot, hurts to the extreme. Even wind or a drop of water hurts beyond. Just really excruciating pain. I can’t walk anymore. I am in my wheelchair or I crawl on my knees with my left lower leg up in the air so it doesn’t my touch the ground. It is categorized as a suicide disease, it hurts THAT much. A soft bump can give me tremors that can last up to 3 hours even WITH emergency meds. Which makes me hurt even more than I already do every single second. I also got Dystonia. Which malforms my feet because they are cramping severely 24/7. Both diseases are in my lower legs/feet. “Luckily” the pain of touch (allodynia) is only on the left side. I went from a young athlete to being disabled and hardly having any energy now in my mid 30’s. (The pain and meds cause an extreme lack of energy). I am happy if I can do 1 light activity a week. So yes, hypermobility can definitely be dangerous. Just like some people with EDS pop many different joints out during the whole day, while doing just normal daily things. Which I can only imagine hurts a lot too. I really applaud her for pursuing ballet despite the risks. I did the same and unfortunately had to pay the price. No matter how much I hurt every day from age 13 to now my mid 30’s, I am still happy I pursued my dance career. I hope she will stay injury free as far as possible of course! There will probably always be (minor) injuries with EDS, I really wish her the very best! Love to you both Josephine and Sara!!

[@christinadoherty3212]

I’m absolutely loving seeing fellow EDsers out there in the KZbin 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!

[@sarajanestruggles5247]

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!

[@tempest2711]

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.

[@kawannahardy2924]

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👍🏾

[@ThePointeShop]

Love that :)

[@audreylowe6553]

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!

[@Saraseeksthompson0211]

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.

[@bunisasleep]

as a dancer who both is diagnosed with hEDS ( hypermobile Ehlers-Danlos syndrome ) as well as being bigger in size, i am so happy to see you size fitting this lady! im only 13 and been dancing since i was 3, so exactly a decade nowm ive been on pre pointe at 10 till 11 when i started going on professional pointe. ive always danced in shoes i knew were too hard and too narrow for me, as well as never feeling like my ankles and feet are supported and having to focus on balancing myself all the time just so i dont flip my ankles. seeing this video gave me so much hope and made me realise that there are people out there who are willing to work with people like me and help us as much as possible. i always had kinda accepted that ill always be a subpar dancer due to both my weight and my disorder, and seeing this video has genuinely given me new found hope! ❤ i hope to one day get a fitting by you, its unfortunate that there arent any pointe shoe fitters in my country, and definetly not ones as inclusive as you are

[@Pandaen79]

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 💕

[@hannabusse8137]

Hi! I'm a fellow dancer with EDS! Though I'm maybe ten years older and starting to get to the phase of the syndrome where you experience more joint pain. But I'd like to say that you really really need to be doing things like bending your knees a little in fifth position! Make them look straight, then support with muscles. Do NOT hyperextend/straighten all the way, then let your tendons and ligaments support your knees. The second is how you will dislocate your knees and get injured in other ways. Same with ankles! Eep! But 100% find a pointe shoe that will support your feet and ankles when they get tired, because those muscles get tired easily, and again you don't have other connective tissues to support you. The shoes, when you get good ones like the ones Josephine fit, are acting like a brace and are important for injury prevention. Also, best of luck! 💕😁. Hope to maybe one day see you around the world of disabled dance! (I'd recommend it as a topic for college research papers for those classroom dance courses they make us take.)

[@MarySanchez-qk3hp]

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.

[@camillywilly4849]

it's the first time i see an overweight ballerina and it really inspire and motivates me because I am too. thank you so much Josephine!

[@Bibblesupremacy1992]

Imagine fat shaming someone

[@camillywilly4849]

@Crispy bacon what do you mean ?

[@jillmclane256]

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.

[@daniellenunn-weinberg5381]

Wow! I've danced just about every style out there except Irish dancing and also have EDS. I also did rhythmic gymnastics as a kid. I wonder why we seem to be drawn to dance? I also used to swim, and had problem shoulders. I was 20 when I was diagnosed with a connective tissue disease, but it took 15 years for a doctor to recognise that it was EDS. It IS more common than most people realize. So, if you are hypermobile ("double-jointed" which doesn't actually exist), have lots of bruises/bruise easily, and have velvety skin, you might want to get checked out for EDS.

[@wayward_gamer2342]

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 💖💖💖

[@valkyriesardo278]

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.

[@shespeex8413]

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! 💜

[@heartandseoul1299]

I love watching Simon and Martina here on KZbin. 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!

[@sarajanestruggles5247]

HeartAndSeoul I love Simon and Martina! #buildaladder

[@heartandseoul1299]

Sara Jane Struggles me too! She’s so inspirational and strong

[@wendysullivan825]

Without a doubt this is my favorite KZbin channel. Josephine is so informative and such a delight.

[@MissMiseryGloom]

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. :)

[@scholarlyhobbit]

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!

[@sarajanestruggles5247]

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 :)

[@ashleydavis3418]

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.

[@lbazemore585]

From the King Kogi channel on KZbin l have been introduced to EDS. I admire Sara for keeping the dance discipline going in spite of this condition. You go girl!!

[@IAmSuzyQ]

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!👍

[@EmL-kg5gn]

This video is so important!!! Thank you so much for taking this seriously rather than just being like wow so flexible. There really needs to be more awareness especially in fields where flexibility is prized because it can be extremely disabling. I hope Sarah is doing well and if she’s willing to share I would love to hear how she’s going and how this is affecting her and being managed now!

[@cardinalfox0734]

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.

[@EmL-kg5gn]

I’m so sorry your friend was put through that… So unnecessarily traumatic. My friend with eds has a wheelchair now too and it’s hard watching her abilities and energy continue to decline 💔 Especially since she has such an independent spirit, it makes every new restriction more difficult for her to accept 😢 When she was your friends age we had no idea. The signs were there but no one realised until pregnancy made it so much worse. She had trouble with getting a diagnosis and medical neglect too

[@brindmusicnerd]

Would love to see a follow up video with Sara and how she gets on with these new shoes!!

[@sarajanestruggles5247]

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!

[@xxprettylittlethings]

Hypermobile EDS is something I have and the more I watch these videos the more I’m thinking ballet would actually help me. One of the things we commonly struggle with is knowing where our major joints are. So we run into things a lot or just feel awkward in our bodies because they don’t behave normally. I must do something with these banana feet I was born with lol 😅

[@caze3154]

Love a dancer who is still going even with some limitations

[@holy_shoot_its_grace]

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.

[@cheriestl]

Thank you so much for this video! I love ballet and have EDS. I take great courage from Sara’s words.

[@fredrika27]

Thank you for doing this and listening to us! The special case scenarios! Thank you!

[@sarahwoodward4453]

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 ❤️

[@jenniferelyse5134]

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

[@stripeyshrimp6351]

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

[@vangu2918]

I'm so glad that you were able to help her feel safe doing something she loves.

[@nicky5078]

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

[@missygee531]

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!

[@sarajanestruggles5247]

Thank you!

[@MizzH]

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!

[@trenae77]

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!

[@fionadotson]

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❤️

[@rebeccaashley4341]

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.

[@breannasnyder8120]

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. ☺️

[@nancyaldredge4246]

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.

[@ThePointeShop]

love that :) I hope you're still dancing

[@nancyaldredge4246]

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...

[@elizabethkaney]

I have EDS!!! Thank you for this!!!! I didn’t realize just how much a safe fitting & a great shoe could boost my confidence more

[@plantwithroos]

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 🙏🏻

[@katiefulton9456]

Sara you’re amazing! Thanks for this info & thanks for this fitting showcase! Blessings to the both of you! 🙏❤️

[@LaBlueStateGirl]

This was inspiring!

[@ThePointeShop]

[@maryapatterson]

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!

[@demariejones3438]

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..

[@mynoveladventures5425]

Oh my gosh I have EDS! Thank you so much for making this video!

[@christiea.6778]

I’m not even a dancer but I love these videos! So interesting!!

[@helenasample4872]

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.

[@mkrosoftpaint]

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 👐

[@Almontedanielle]

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.

[@diannaagronrox]

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.

[@18BDM]

Fellow EDSer here and used to do ballet, gymnastics etc. Great to include all types of dancers and flexibility!

[@FiMilton]

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!

[@yaelifembotnikova]

Im saving up for my EDS test but your legs and feet are like mine. I roll and twist stuff all the time. Ive wanted to try ballet type work to strengthen everything. Yay! Hope!

[@christinadoherty3212]

Yaeli Fembotnikova Definitely be careful as a dancer starting out. They talked about it a few times, but this dancer is a practiced dancer. She may have taken some time off at one point (pointe 😉) but she has been doing this a long time and has learned her limits very well (you can tell when she’s discussing her posture and how she has to correct her alignment when dancing. EDS is usually a contraindication for ballet unless a dancer does have that awareness and strength that this lovely young lady does. You will need to look for a great fitter like this and an instructor that really “Gets it” You may want to pay for a few private lessons before joining a class, just so you know that you and the instructor are on the same page.

[@shessupersalty]

Its so nice to see a dancer with hypermobility like me ❤

[@dandelionmel]

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

[@raeofsunshine17]

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.

[@RTdances]

i don’t have EDS (as far as I know) but i had a lot of similar fit issues when i was en pointe. i wish i had had such a comprehensive and knowledgeable fitting when i was still en pointe! i always struggled with the shank twisting

[@amandaleggett]

Never thought I’d see another EDS warrior on pointe! 🤍🖤🤍 🦓

[@lavendergrey2357]

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!

[@cfr1985]

you should try to fit Kathryn Morgan from Miami city ballet !!!!! i would love to see thaaaaat !!! ithink it would be super coool !!!!

[@hollied5807]

This video helped me get my dx. It was the second to the last nudge I needed to pursue it. Thank you ❤️

[@outoftheklosset]

I have EDS too and I danced for 18 years. To say that I miss dancing is an understatement. Unfortunately, I cannot dance anymore :( the dislocations for me are too many and too big. I also had a spinal csf leak so I am not even allowed to do yoga or stretch much at all. Sometimes there are limitations and that's just something disabled people have to accept - as unfair as it is. I'm so glad Sara doesn't have to stop doing what she loves! That brings me so much happiness!🥰💐

[@thatlovelydancerIlao]

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

[@edensgm]

I do ballet and I have hEDS too! Happy to see this video ♡

[@RachaelGiglio]

Yay! My daughter is a dancer and she is hypermobile like this. I have EDS, she isn't diagnosed yet, but she probably has it.

[@sarajanestruggles5247]

Make sure she stays strong and has a good physical therapist to keep her going and protect her joints!

[@cemthm09]

I feel like you were doing a fitting for me. Plus sized, former dancer with EDS. My very first week of dance as a 3rd grader I can remember my dance teacher telling me (jokingly) to not let the older girls see my feet because they would be jealous that they’ve worked years and had yet to achieve what I had naturally. I’m 38 now and feel like my body is falling apart 🥺 I fell down stairs Tuesday and twisted my lower leg so badly. X-rays didn’t show a current fracture but apparently I’ve had an old fracture in my ankle for years and didn’t know it. 🤷🏼‍♀️