Bend or Break | EDS Documentary (AWARD-WINNING)

Bend or Break is an award-winning documentary based on the memoir of Mitch Martow. The story begins with a 14-year-old boy's struggle with sudden chronic pains and takes us on a journey of multiple misdiagnoses to finally understand the actual disease (EDS - Ehlers Danlos Syndrome).
Ehlers-Danlos syndrome is a set of illnesses that affect the connective tissues that support the skin, bones, blood vessels, and many other organs and tissues. Ehlers-Danlos syndromes are presently divided into thirteen categories. Pain and weariness are nearly universal in the Ehlers-Danlos syndromes. The total prevalence of Ehlers-Danlos syndromes ranges from one in 3,500 to one in 5,000 persons. The hypermobile version variant (hEDS) is by far the most prevalent.
To connect with Mitch, here are some helpful links to his various EDS projects!
1. The Bend or Break medical blog group where people can read the memoir the documentary was based on (film covers events up to 2018, recent blog posts continue the story): groups/16329...
2. Direct link to the blog/memoir for if you don't have Facebook: breakorbend.blogspot.com/
3. Bend or Break EDS/medical Instagram page: _bend_or_br...
4. Mitch's personal Instagram page for non-EDS-related fun: mitchmartow
5. Mitch's game streaming twitch channel catered to those with chronic illness, but all are welcome to hang out and have fun: www.twitch.tv/druidzebra
6. Mitch's discord server for gamers with chronic illness/zebras (we play all kinds of games together!) discord.gg/m7MkWByTqt
7. Mitch's Facebook group for those who want to be notified when he goes live on twitch: groups/44602...
8. Mitch's KZbin Account:
• My Bend or Break Ehler...
9. Mitch's Tedx Talk on EDS
• My Bend or Break Ehler...
10. EDS Canada page: You do not need to be Canadian to follow edscanada
11. EDS Canada support group where Mitch is a moderator; you need to be a Canadian with EDS to join groups/11573...
12. If you enjoyed the documentary, please give it a rating on our IMDB page! Making an account is free :) www.imdb.com/title/tt12510694...
13. An International Support Group for men with EDS where Mitch is admin:
groups/14393...
14. An EDS/Invisible disability presentation Mitch did as a guest speaker at a High School!
• My EDS/Invisible Disab...
Directed by - Karan & Sidhant Sharma
Director of photography - Jashan Singh & Jarred Murray
Music Composer - Ameya Saraf
Sound Designer - Vidan Hadzi Vidanovic
Camera operations - Adil Shah & Jordan Kelly
DI Colorist - Prateek Mahesh
Assistant Director - Daniel J Bensimon
#eds #ehlersdanlossyndrome #documentary #documentary2022 #heds #ehlersdanlossyndromehypermobility

[@voyagerstudios3336]

To connect with Mitch, here are some helpful links!: 1. The Bend or Break medical blog group where people can read the memoir the documentary was based on (film covers events up to 2018, recent blog posts continue the story): facebook.com/groups/163290407054413 2. Direct link to the blog/memoir for if you don't have Facebook: breakorbend.blogspot.com/ 3. Mitch's Bend or Break page for all his EDS/Medical content: instagram.com/_bend_or_break_ 4. Mitch's second personal Instagram page for non-EDS-related fun, frequently featuring his doggie Chelsee: instagram.com/mitchmartow/ 5. Mitch's game streaming twitch channel catered to those with chronic illness, but all are welcome to hang out and have fun: www.twitch.tv/druidzebra 6. Mitch's discord server for gamers with chronic illness/zebras (we play all kinds of games together!) discord.gg/m7MkWByTqt 7. Mitch's Facebook group for those who want to be notified when he goes live on twitch: facebook.com/groups/446024940229072 8. Mitch's brand new TikTok account with content on the way! www.tiktok.com/@mitchmartow 9. Mitch's KZbin Account: kzbin.info/www/bejne/hX6mgZmMeKZ8g5o&ab_channel=MitchellMartow 10. Mitch's Tedx Talk on EDS kzbin.info/www/bejne/hX6mgZmMeKZ8g5o 11. EDS Canada page: You do not need to be Canadian to follow facebook.com/edscanada 12. EDS Canada support group where Mitch is a moderator; you need to be a Canadian with EDS to join facebook.com/groups/115737332411227 13. If you enjoyed the documentary, please give it a rating on our IMDB page! Making an account is free :) www.imdb.com/title/tt12510694/؟ref_=fn_al_tt_1

[@melodieneil712]

I learned something valuable today. Thank you for the education on EDS. My heart truly goes out to people who live w horrible chronic pain. Others simply don’t see it, or understand why we cannot just “pull yourself up by your boot straps” and get over it. I lived with horrific pain for 15 years, and I too was told it was all in my head, and offered no hope. Suicide seemed like a good option b/c I needed a break from the pain. I couldn’t do “it” anymore. I broke. I ended up doing my own research and tried many alternative treatments, some of which helped. Today, I am stronger and pain does not rule my life EVERY second of the day, and I’m grateful beyond measure. I do not have EDS, which I learned today it is incurable. My heart breaks thinking about how much of a challenge it is for EDS patients. I’m grateful that Mitch has a support group who understands. You’re in my prayers🙏🏼

[@shannongreenwell1278]

@@melodieneil712from someone who has EDS, Thank you for your understanding and support!

[@amandasmith7096]

Thank you for sharing your story so Beautifully Mitch... I am sorry for all of the suffering you have endured physically, mentally & emotionally. I can 💯 % relate to the weight that was lifted once having a diagnosis. The medical Gaslighting that typically occurs to patients with "Rare" &/or Chronic Conditions, is Criminal. What a wonderful Father, Mother, Sister & Brothers... We often do not realize just how much our loved ones truly care. Thank you again for sharing & making this documentary

[@gaylehudson7267]

This idea that pain comes from the mind and not the body needs to go away. Pain does not come from depression, depression comes from severe untreated pain.

[@jean9luise413]

LOUDER for thr GPs and Psychiatrists in the back!

[@FemmNoir]

If anything it works both ways

[@user-mo6dt9lw7g]

EXACTLY! it is so obvious to us, why can't others understand this? Pain is like a jail we cannot choose to escape from! like a permanent curtain between us and the sun everybody else can see, and touch. What gets between us and our dreams, in the ONLY life we are ever going to have. It's heartbreaking. And sometimes we try so hard... until it feels futile. Of course, I know there are people who have more terrible diseases, people who are in wars... but that does not help me to feel less physical pain. Somebody else's misfortune does not make me more feel more fortunate. It does not work like that. It only contributes to make me feel guilty for not feeling more fortunate, for not being able to "count my blessings" all the time, and it does nothing for my pain, my POTs, or my fears. There is a point you stop talking to others. In my case, pretty much completely. And you cannot do the things you loved or wanted, any longer, because of the pain, because of the loneliness, and because it feels futile. I'm very touched to see how involved his family was all along. My family is far, but never cared much in any case. It has been a really lonely journey, a really lonely life. So, I had to be my own guidance, and support, and cheerleader, for many years. And once I found out what was happening to me, what had been happening to me all along, I did not feel comfortable enough, close enough, to anybody to open up. The few times I did, even if on passing, I was looked at with suspicion, disdain, and I would not press hard. Only last year, when I again touched rock bottom, I felt I could not go on, and thought well, what do I have to lose... and kind of to start saying goodbye, I told my father, with whom I never had a close relationship. He, surprisingly, took an interest in it and began researching with me and gave me a lot of valuable information and support I never had before. It has made a big difference. Social support is crucial to navigate the phobias, the bureaucracy, and the negativity and despair that can take root in our minds and hearts. now there are tons of stuff out there about EDS, but when I was diagnosed in 2013, nobody, not even myself, knew what this was. It's amazing how many doctors still know nothing about this (apparently they do not hang out in KZbin enough. Maybe they should) To all the "zebras" out there, and their families and friends, thanks for sharing your stories and tips on how to handle some of the most difficult aspects of this condition. (I have a hard time calling it illness, because I have a hard time accepting that I, myself, have a terrible chronic condition that I will never be able to experience life without) True knowledge and compassion will open a window for us, even as we can never leave this jail.

[@julieshenk7640]

Beautifully conveyed. Diagnosed close to 70. Escalated now. Everything you shared truth. Affirmative for me and trying to hold on, too.

[@daxhopkins7312]

It can go both ways, depression can cause physical pain. but if the pain arises before any other depression symptoms, it should be considered a likley cause of depression, and worth treating independantly of any mental issues

[@india1422]

For those who say that anyone having a failed suicide attempt is attention see,ing- yes! Let’s give them attention. Let’s give them the attention they need to recover fully and have a joyful, full life.

[@eloisemarie5219]

I hate that people think they can define my disability and how disabling my condition is by looking at me for 2 min.

[@LadyPashta]

It took me 9 years to get a diagnosis of Hypermobile Ehlers-Danlos Syndrome and it was not a doctor that figured it out - it was me. We REALLY need to update doctors on this, EDS has changed SO MUCH since 2017!

[@astralb.2647]

It took 7 years for me, and yes. I placed the criteria list in my Drs hand and told her to get me to a reumathologist to get a dx haha

[@trish5111]

In spite of all my joints cracking and regularly throwing my back out in primary school playing netball, having being diagnosed with osteoarthritis at 18 and then needing joint replacements by 40 and then being diagnosed with 'fibromyalgia' after aquiring chronic neck pain from bad ergonomics at work...I was 50 before Iwas diagnosed. That only happened when a friend sent me the hEDS checklist and I took it to my rheumatologist and said - what about all this ??

[@Vee_of_the_Weald]

Same here. I was 40 when I finally got diagnosed

[@coda3223]

This was the same with my POTS, MCAS, Autism, and hEDS. All of these were things I figured out before the doctors did. AND my GP has EDS type 2!!!

[@_snorlax_xx]

Even tho I was so sick my whole life and in and out of hospitals, I wasn't diagnosed until I was 27.

[@jinns9503]

20 years of gaslighting. Finally have the formal diagnosis. I suspected it for 5 years. Too many are blown off, especially women.

[@user-lb8do4ew6k]

My father my brother & my son were all told, "EDS only happens to women" by their three different primary care physicians.

[@jinns9503]

@@user-lb8do4ew6k I genuinely hope someone filed a complaint. That is not just ignorance but sexist willful stupidity. Its really disheartening to see and hear how many doctors have lost the medical curiosity. Its like they got out of med school and decided they didn't want to learn anything anymore. They do the bare minimum to maintain credential. Its a disservice to their profession and their patients. I hope it changes.

[@annerigby4400]

If someone tells you that they are suffering, it is simple: believe them. Nobody claims to be in pain or distressed if they're not, unless they have some mental problem, so either way, one should show consideration, kindness and concern. It really is that simple. Being in pain or distress and talking to someone about it, actually can help and all it takes is someone to listen. How difficult is that compared to being in pain or distressed? This video is tremendously important and hopefully will help people who watch it to realise their role in helping people just by believing them.

[@Catlily5]

Mental pain can be bad as well.

[@annerigby4400]

@@Catlily5 That is what I was saying when I said "in pain or distressed" - pain is physical and distress is mental, well as far as I'm concerned, anyway. ☺

[@Catlily5]

@@annerigby4400 Yeah, I was agreeing with you but didn't make it clear enough.☺️

[@annerigby4400]

@@Catlily5 😂 oops!

[@ajh3301]

My best friend and her daughters have EDS. I have just about the opposite. My autoimmune disease is called Progressive Systemic Sclerosis or Scleroderma. Instead of not having enough collagen/structure, I have too much. It causes chronic pain, fatigue, internal organ damage, etc. and is progressive, incurable and untreatable. Being disabled by these rare and often invisible diseases is devastating. No one can see pain and fatigue. As was said, we often push through to get something done but then spend three days in bed, with increased symptoms, recovering. Doctors need to stop telling patients it’s all in their head just because they can’t figure it out!

[@mariespierin5737]

My pal has schelorderma also. I'm so sorry you have this awful disease. Wishing you the best. Ive eds. Best wishes

[@melissafarrugia9531]

Thanks for sharing I know something is wrong, although I only score a 5 on bighten scale. Your comment is so helpful to me now, as I am about to have a geneticist appointment next week. I have MCAS, pretty obviously POTS, fibromyalgia type pain along with joint pain, gastrointestinal upsets, TMD fatigue and weight loss. I’m certain there is something going on genetically as many of my cousins have similar issues. I’m sorry to hear about how Progressive Systemic Sclerosis affects You but thank you so much for mentioning it, as it could be the cause of many similar issues but not quite the same as EDS, and is perhaps just as difficult to diagnose.

[@tiegrsidesignsandstudio4794]

I am almost 20 minutes in and I had to stop because he just openly admitted that he is ONLY still here because he feels guilty after failing and his family all told them how awful THEY would feel if his pain was ended. So then he felt exactly as horrible as before, but also guilty for being who he is and *selfishly* wanting his pain to end. I don't want anyone to ever feel like unaliving is their only choice to stop being tortured...but I also think it's INCREDIBLY awful for people to say to someone 'my pain of missing you if you go is more important than your pain if you stay'. I don't think anyone MEANT to say that...but from what he just said, that is absolutely the take he got out of it...and I empathize with him. We humans will put our pets to sleep without their consent to stop their pain but we force other humans to continue existing even though they are sentient and can tell us they don't want to exist anymore because of prolonged pain. I'm glad that in this case it seems there was a positive outcome. If you inow someone who is struggling with pain and has indicated they want to leave because of it, please, PLEASE don't tell them how awful you would feel if they left you. Find better ways to make them feel empowered to stay instead of guilted into it, if it's at all possible.

[@bonnylouwho76]

I was JUST discussing these factors with my Case Manager a few hours ago in my livingroom.

[@tiegrsidesignsandstudio4794]

@@bonnylouwho76 thank you for replying, it brought me back to my own thought at a time when it's rather apropos.

[@CAZZIEK321]

I have chronic fatigue syndrome. Now I’ve retired, I can rest when I want and it’s helped me greatly, but in the early days my husband accused me of lying about my health and said I was using it as an excuse. It’s the worst thing in the world to feel like death but have those whose support you need, call you a fake. Thankfully we are now divorced and I’m much fitter than I was back then.

[@moniqueengleman873]

I completely understand that feeling. I was far from lazy. I pushed through. Chronic pain really is misunderstood. Hang in there❤

[@xGINGERxBREADx]

Completely understand. We gotta start believing people. People fake being okay, not being sick. I was in highschool when doctors said I had chronic fatigue or maybe narcolepsy. It led to me abusing drugs just to stay awake to do my lessons. My family said I was "doing it for attention." Turns out it was all from thalassemia. (a genetic blood cell disorder. symptoms only began appearing really badly after periods began, from loosing blood.)

[@moniqueengleman873]

@@xGINGERxBREADx That is super rare. But I am glad they figured it out . Having a low blood volume makes everyone fatigued. Good luck. 🙏

[@lucyhanks500]

@@xGINGERxBREADxis lymes disease also called pernicious anaemia? How come a blood test doesn’t detect when the stomach can’t process iron & vitamin B? The symptoms remind me of will feral when he’s playing the guitar and an insect lands in his back.. by the time his face turns white and his under eyes purple/gray and he passes out, the tick on his back is the size of a planet? Brings nuance to the term having a drink really.

[@lucyhanks500]

@@moniqueengleman873the reason low blood pressure makes you fat, is because the subconscious believes an excessive appetite for food will generate enough energy stay alive.

[@zoe2882222]

Just wanted to point out that there is a proven correlation between EDS/HSD and ASD (Autism Spectrum Disorder) for those who aren't aware. Mitch experienced sensory issues in childhood which can be a sign of ASD. Personally, I found it so liberating to realize I had HSD and ASD and that it wasn't all in my head or me being "lazy". Best wishes to everyone, I hope you find the answers and solutions that fit for you

[@tuxu14]

I'm on the spectrum and kinda assumed he was. I have a good radar but try not to assume. The social struggles plus sensory sensitivity. A few other things.

[@mlapointej]

In ESD sensory issues are present in most patients and are not indicative of other issues. While Autism is present more often than in the general population our skin is more sensitive because it is fragile. Other senses can be similarly affected because of the collagen issues. So well it may be indicative it also is a completely normal almost always present sign even without autism in EDS. Edit to add: Agreeing with you somewhat just wanted to point out that sensory issues sometimes quite extremely are very very common in EDS even in Neurotypical patients.

[@srs3572]

Absolutely. I am mega sensory issues. I'm self-diagnosed with ASD. Just dx with hypermobile EDS at age 44.

[@bjdefilippo447]

Can you point me in the direction of that research? I'm another with both EDS and ASD, and it's pretty disturbing to have a Ph.D. in Social Cognition and yet not have been trained with this information.

[@zoe2882222]

www.ncbi.nlm.nih.gov/pmc/articles/PMC7711487/

[@saul.t.2.969]

Regarding invisible disabilities, there’s another reason not to judge one another.

[@josephineanderson8533]

I’ve never felt more understood in my life than when Kathleen Eubanks described how she was feeling and how she would feel after the interview.❤️

[@jessiehuff34]

Agree

[@vinoandkittens9552]

Same. I can make myself look "normal" and do "normal" things, but oh how I pay for it later! I have to constantly assess what is worth a flare in symptoms and what is not.

[@fionawinterfield2635]

💯

[@rampagec_a-r_ma4941]

I have thought and felt everything him and his family said. He is so incredibly fortunate to have a family who believed and supported him. Unfortunately my mother is a covert narcissist who would tell me my inability to at least pretend to b a daughter that wasn't so hard to love is so stressful she might have a stroke. She still tells me this, and at the age of 46 I was am so dysfunctional because I only was able to diagnose myself when I discovered EDS after researching symptoms online and I was diagnosed Bi-polar at 15 because my dad is bipolar and I know my mom has EDS but she won't admit or even try to consider that all theses medical problems she has could b what I have told her that I know is what we both have and so does my daughter but she refuses to accept it and she just denys anything that makes her feel bad including me

[@anntunaley9974]

Yes

[@user-ex6iv4xo6x]

I’m still in awe over this video for so many reasons. I cried for Mitch, for myself, for my son. I can relate so much to all of this. I hope and pray that we can continue to share this video. That others can begin to understand the repercussions of blaming the patients mental health, doubting their pain, not having the knowledge to properly diagnose and treat. My heart aches for Mitch and each one of his family members that had to watch helplessly. Their love for him is so apparent. Thank you for sharing these stories. I’ll share this story as much as I can .

[@scottpreston5074]

Toria Summerville is the dancer. She is remarkable and conveyed powerful emotions with her movements. We should know more about her. 💖

[@gailvanderwalde4814]

Omg she is so incredibly good. ❤️👍🙏😊

[@jazig9565]

I haven't watched this yet so I'm not sure if it mentions it, but she also was diagnosed with EDS! She didn't specify which one but I saw her saw it in a Facebook comment on a post sharing this documentary in an EDS group that I'm in!

[@isashisha]

FINALLY a documentary on EDS!!!!!

[@LadyPashta]

It's not, though. It's a documentary about one person with EDS, not EDS in general. There are some out there, though, at least one.

[@Lara-xu3yc]

​@@LadyPashtadid you watch the entire documentary? There are several people who talked about their condition. Not just one.

[@LadyPashta]

@@Lara-xu3yc There were mentions of others, but the thing is centered on one person.

[@lesliejanicke2250]

I’ve been in pain for 30yrs. & I totally understand you,nobody can understands. They all think you’re faking.

[@NickUncommon]

EDS is still not oficially diagnosed. I was dx as hypermobile, though in my 30ies. Now over 50, I get to not be visibly hypermobile except in hands and neck, the pain wears me down for decades now and after being told over and over again, the doctors can not find anything really wrong, I gave up on talking about where things hurt and suffer on in silence. Geneticist found a mutation of unknown significance but since it is not yet researched on, we cant take anything helpful out of it. Thanks for the awareness this documentary spreads.

[@Hummingbird-ns1fp]

It took 63 years to get my official diagnosis. I’ve struggled with dislocations and joint pain as long as I can remember. So many severe allergies and digestive problems. I kept wondering how I could have so many “rare” conditions if they were so rare! Congenital hip dysplasia that wasn’t diagnosed until I was 17 months old. When I learned about EDS it was like reading my own life story! I mentioned it to my doctor. He said that I did have symptoms that went with EDS, but since there’s no cure having expensive genetic testing was just a waste of time. It made sense. An ortho specialist said the same thing. I just gave up on getting diagnosed. When I mentioned it to my dermatologist, I was surprised that she referred me to genetics without hesitation! It took over a year to get an appointment, then waiting on results. When it was confirmed, it was a huge sense of relief! No “cure”, but finally the puzzle came together! I was advised to take high dose vitamin C, and that’s easy enough! It helped me so much! I’ve been ashamed of the pain and fatigue, but I’m so glad I told my Dr. about it. I feel hope for the future that just wasn’t there last year. I’m so grateful...if I’d known earlier I’d have been much more careful with my joints. I can’t change the past, but I can understand it, and it’s really helpful to finally know WHY! I’m so glad it’s being recognized more often, good luck to all my fellow zebras!

[@carltonlawson2045]

I am a 21 yo biological male who was just diagnosed with hypermobile ehlers danlos syndrome thanks to this documentary. I have had most of the symptoms Mitch has to some extent. God have mercy on us zebras and all of the sick people in the world. One day our condition will be understood!!

[@StephBer1]

Thank you for this documentary. I cried during this because I went through 37 years of medical appointments and psychiatric appointments telling me there is nothing wrong with me. This should be played in medical school as a learning tool. I'm 60 and I'm still on a waiting list to see a geneticist but I figured out myself what I have. I've seen so many doctors in my life and even as late as last year, when I asked a neurosurgeon to diagnose me, (part of what he did), he said, "Why bother? You're already sixty. It's not going to help you. Besides, I get annoyed with EDS patients because you diagnose them and then they read up on it, and they come back to you with all these new symptoms! It's almost like a hypochondria." This is the type of medical support EDS sufferers get. We moved cities so I could go to an EDS physio, who has EDS herself. It's amazing how much she understood, because she has it herself. The medical profession is criminal in their contempt of EDS sufferers. The gaslighting is real, the loss of friends is real. We are usually intelligent people, who go to university but then have to give up work/study after a time because working at a desk for 8-10 hours a day is just torture for us. And we pass it onto our children. Both mine have it as well. So did my mother, and an aunt of hers. They weren't diagnosed but I now know from my understanding of EDS that they had it. ASD, ADHD, body dysphoria, and a high level of gender dysphoria is also linked to it.

[@hannaR_]

I suspect that I too have EDS, I have very hypermobile joints which sometimes "dislocate", at least it feels so. For example, I have a feeling that my shoulder is not in the right place, and then I do "the right" movement and something "pops" and after that I have a normal feeling in that shoulder. My skin is very smooth, I look at least 10 years younger. Sometimes I have mygraines, neck pain. I don't know if that is connected... I recently started a new job, and after a few days, my hands were hurting so much and I was extremely tired. All I could do was go to work and rest the rest of the day. I didn't have an energy to talk to someone on the phone. This work wasn't physical, but there waa some work with hands on some days. My fingers were hurting, my elbows, my shoulders. I told my boss, she kind of understood, but she didn't call me back to work after summer vacations which we had. Fortunately. Because now, after a few weeks, I finally feel like myself again. Could this extreme exhaustion be from EDS???

[@VintageRayne]

@@hannaR_Myalgic encephalitis, post exertional malaise 🧐

[@cutechiangels]

@StephBer1 Same with me !!! 😢 Even with the long lists tikked, my rheumatologist doesn't think so !! He says it's fibromyalgia!! Which it isn't!! But, other specialists have diagnosed me as EDS. Also, only way over 50!! In and out of hospitals all my life... Ugh. Desk work was horror!! Such a struggle, and so few doctors around (in my country only three, and they are all retiring, now!! No replacements... Ugh!), who really know and understand this very handicapping syndrome. I try and make as many as aware possible, but most don't listen or just shake it off. Ugh !!! I always knew I was 'different', and also hyperlax. I knew that my body reacted very differently than the norm. I did many alternative thérapies, which often helped me a lot. Till this day there isn't a cure, nor therapy. Even one of my ostheopathes who has EDS too, doesn't really understand my body, and the way it's hyperreactive !! I often have shoven that aside, only to feel worse afterwards. So, now I try and listen to my body more. Not easy at all, coz it's a daily struggle, and very tiring. I go along with my days quite lonely and very misunderstood. Eventhough now I have a 'barbaric' name to put onto the aliments, which at least makes that not mental oriented, for laymen. 🤔😓 And, that's already one part I won, over this huge physical daily struggle. I just wish people would be more comprehensive and kinder. 🙏

[@beulahpalmer2206]

Im 81 and a retired nirse. I feel that after 4 neurologist amd tons of studies, and ENT visits. No results. I sat on the bed and cried. A voice in my head said?, look up Ehlers Danlos. I feel it was a gift from the Holy Spirit. I researched for someone who treated it and was 100.percent diagnosed after 12 years of seaking answers ..even was referred to mental health..

[@telephassarose3501]

Such a supportive family…! I wasn’t diagnosed with Marfans/mixedEDS until 53 years, after suffering my whole life - pain fatigue migraine, dural ectasia, csf, falls & fainting…fainting weekly at school. Gynaecological & intestinal problems. Osteoporosis, heart valve prolapse. All the time told I was lazy, self-centred, depressed, had CFS, hypochondriac, “neurotic old rat-bag”(from my sister)…. My mother was sorry, 2 years before she died…but none of the rest of my family (who hadn’t died) have acknowledged. Life is unjust for some.

[@pyrethorn]

It kills me to hear that I'm not the only one who got consistently told that my chronic pain was all in my head. Took 5 years and several more surgeries for me to finally get an answer about my pain. Nothing is worse than having doctors tell you that it's all in your head and you just need more therapy. Just like him, I knew it wasn't in my head. If it wasn't for my husband, odds are, I'd have taken my own life. Being in pain and not getting help fucking sucks. My heart goes out to this guy. I don't wish this journey on anyone.

[@VioletBlue14]

It took me 20 years to get properly diagnosed and every day is a battle just to stay alive. I couldn’t have kids, had to quit school, can no longer work and am mostly stuck at home in bed because my pain is so severe. I pray for everyone else suffering with this horrible condition. It’s not a life I’d wish on anyone. ❤

[@ronA8te]

Of course you don't have to answer but at what age did your symptoms start? I'm really afraid that I have EDS. I always had extreme hypermobility, long thin fingers and at 14 I developed scoliosis. But I never hat any other problems.. now at 24 I developed symptoms over night and no doctor knows what it is... I also rarely have pain or joint dislocation. My problems are strong fatigue, pots, breathing issues, stomach issues from time to time.. could it be eds even without everyday-pain? 🥴 I hope not.. I will get testes in a few months..

[@jayneh8263]

@@ronA8te EDS comes on in different ways in each person. Also the onset of chronic pain is so insidious that I only noticed it when I took a tramadol and it stopped. I have EDS. Gaslighted for decades by my doctors and told it was stress and hysteria. My first symptoms other than overnight leg pain as a kid and weak muscles were sharp stabbing hip pains when I was 22. Over many years I have developed everything on the list but there were years I would have said I didn't have EDS because I didn't recognise daily pain for what it was. There is a self checklist on the EDS website - have a look.

[@ashmac87]

It's very touching to see how much Mitch's family cares about him. Chronic pain and fatigue are so isolating...

[@lisbyers]

43 years and a two-year wait on the waiting list for the EDS clinic to get a diagnosis, but my whole life makes so much more sense now!

[@srs3572]

Diagnosed at age 44 here!

[@Raittway]

My heart goes out to Mitch and his family. I was diagnosed with "Osgood Schlatters" at age 12. It wasn't my regular doctor as he was out of the office. My regular doctor told me that it wasn't OS. He wrote a gym excuse from 7th grade through 12th. At the time, I didn't think anything of it. I have never met anyone who was excused from gym for that long. I wish I asked my Mom about it, but she passed 6 years ago. I had major knee surgery at 19. I have had health issues my whole life. I was diagnosed with fibromyalgia. The list of issues I had and still have is lengthy. My husband left me because of it. Yeah he's a major ahole. My daughter was diagnosed with EDS a few years ago. I googled EDS and every health issue I've had for decades was listed! I was finally diagnosed, by a specialist, with EDS at age 64. It would have been extemely helpful if I was diagnosed decades earlier.

[@bonnylouwho76]

What kind of specialistt did you find? Two of my children have "O'S" , their Dad had it, and I didn't know that it was related to EDS. My daughter has figured that she has EDS and we think I do as well. I was diagnosed with Fibro, Chronic Fatigue Syndrome, DIabetes, Celiac Disease, Mast Cell Activation Disorder, and MORE. I did had the hyperextended joints until as an older woman it is less due to injuries and illness. I DO want to know more so I can help my children. I was abused and thrown away due to becoming ill from chronic illness, which didn't really have diagnosis back then. My daughters husband dumped her due to her having developed RA when she was in her late 20s. My other daughter has chronic debilitating illness and had cancer. We are just trying to figure things out, all. of. the. time.

[@Raittway]

@@bonnylouwho76 I am so very sorry about all you have been through. I was diagnosed incorrectly like you. I had 5 specialists during my marriage and they all missed it. There is a definitive test for EDS. A rheumotologist is a good start. Otherwise ask your regular doctor where you can get tested. EDS is a genetic disease. I think my Mom had a form of it. She could bend to the floor with her knees straight in her 80s. It's fairly rare and there are about 13 different types. My heart and prayers go out to you and your family.

[@rachellerockwell3702]

I was told in 5th grade that I was faking my illness because I didn’t want to go to school. At the time I loved school. I live in NC and this was from a dr at Duke. He was supposed to be the best. After that I just went along as life was normal even though I felt bad a lot. I just rarely talked about it. I was finally diagnosed at 26 with hEDS. I felt vindicated and scared. It’s been a difficult 11 years. And I still struggle every day but you keep going I guess….

[@DougKremer]

hEDS Male here. Thank you for this. 🦓❤️

[@Healinghands829]

Thank you! I am awaiting my formal diagnosis from the genetic doctor. My ortho and my physical therapist are certain I have at minimum hEDS. I cried watching this bc my mother was always in pain and as kids we couldn’t believe someone could be bedridden every other day. She spent her entire life without a diagnosis, told she was crazy consistently. She too was on a ventilator after trying to take her own life. Thankfully she survived but only for a year before cancer took her in 2015. For the past few years my pain has mimicked hers in many ways but I’ve always had pain even since I was a child. I’ve decided my mother had EDS because it’s what makes sense and it’s the diagnosis my providers believe I have. I wish she was here so I could apologize to her, she’s not, and I can’t. Instead, I laid a toy zebra on her grave and I hope she knows that I believe her, and sorry I didn’t sometimes.

[@DoubleBlack2.0]

🫂🫂🫂

[@FamilyHistoryAus]

Was so hard to watch as mom of a 15yr recently diagnosed and called lazy and being told it was all in her mind for so long

[@srs3572]

I'm so sorry 😰

[@N0N4M30]

Your kid is lucky , for me it was my own mother telling me it’s all in my head until I was old enough to go see a doctor on my own to be diagnosed with hEDS

[@FamilyHistoryAus]

So sorry that happened@@N0N4M30

[@altruistichealing2103]

I’ve felt medically “gas lit” my entire life.

[@GummyBear1972]

Why doesn't this have more views than 350?! I need more people to understand this condition and work on it. Doctors, learn to recognize it, learn how to be extra cautious with your EDS patients and our fragile skin and joints. Please share this video.

[@mitchellmartow]

It had 350 likes, it has almost 9500 views :)

[@bekahe4433]

48,950 views😊

[@mitchellmartow]

@@bekahe4433 79k views, after only 6 days! But actually closer to 85k because we first went through a few film festivals where the awards were won 😁​

[@laratheplanespotter]

Who put my life story in a video? Apart from fainting and gastro issues, I was completely okay until I got glandular fever in 2010 age 24. Never got 100% better got my diagnosis in 2017 and I’m now tube fed. This was a tearful video. Thank you Mitch and family 😢❤

[@jo-annahicks3324]

Do you have ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) as well? Due to Epstein Barr Virus (EBV)..that causes 'Glandular Fever/Mononucleosis)? I have had it for 36+ yrs...I had two friends who had both EDS & ME/CFS...one of them, was the most beautiful, incredibly flexible ballerina...I was at the Australian Ballet School (attached to The Australian Balet Company) with her. We lost contact for a few decades...then caught up.only to find, not only the ballet link...but also 'the Invisible Illness' link, as well (unfortunately). She sadly passed a few years ago...I miss her terribly..she had a healing clinic that she ran, which unfortunately folded due to the pandemic...she was so intelligent, both intellectally and emotionally....I miss her so much! I think she 'sent' me this video to watch..we were also quite psychically connected, as well...the Interconnectness of all things! Always listen to those 'promptings' in Spirit...I clicked on this video link, from the image of the beautiful dancer, on here, that reminded me, so much of my, and Michele's history. Keep 'bending'...I wish you well. (Just an afterthought...there is anME/CFS organisation, that has wonderful information resources, that may be of help to you, & many others on here (I believe these two condition symptoms, are often linked...mecfssa.org.au) I pray for a cure for both these conditions.

[@tiffanielee7016]

I suffer from EDS, P.O.T.S, syncope and many other diseases and thank you for making this! I’m hoping the world will start to see that I’m not lazy either.. I’m so fatigue and I don’t sleep more than 2-4hrs at a crack either..I’m 40 hrs old and so tired of pain and being so exhausted and no one understanding etc

[@deathbysnusnu1970]

Wow, that's the way I sleep too. So much, the same as me. I'm 52. You're a zebra. You are unique and special. You are worthy of love and happiness. I'm a zebra as well, which means that you and I are in the same herd. We're family! As a sister zebra, I just want you to know that I understand. ❤❤

[@zelinabott-goins8719]

I understand. I have EDS, endometriosis, and chronic pain and fatigue. I feel for you 💜

[@mlunell]

I hope this documentary and the many responses gives you a sense of shared understanding.

[@clinkedylinkedy1]

Disability Justice now! Thank you for making this film. We are not alone. I love you all!

[@fluffsternormalpaws1443]

Thank you for making this doc! I have Ehlers Danlos. I’m glad I was finally diagnosed by a geneticist. This was when I was in middle age, after decades of gaslighting. Still no help from doctors because none of them know what it is. I gave up on doctors! We need more research and more awareness. Best wishes to anyone suffering with these sorts of problems

[@SuperReznative]

Pray to Jesus ,ask for help along life,'d way... Shalom

[@ClaireDCoaching]

Ooooi. “after decades of gaslighting” hit me real deep. Sending love my fellow Zebra 🦓❤

[@Chels-fz5uq]

Doctors learn about this in medical school but most of us never see it in practice. I have two rare autoimmune diseases and it took two decades to get a diagnosis even though I’m a doctor myself. Medicine is hard and humans are flawed diagnosticians

[@GeorgiaGeorgette]

​@@SuperReznative What do you think Jesus is going to do for an incurable disease?

[@catmoore2443]

It took 8 years to diagnosed me. I thought it was in my head. I got diagnosed accidentally whilst seeing the podiatrist at the hospital for collapsing arches a rheumatologist was passing through just happened to over hear all my symptoms whilst speaking and ask me if i have been checked for EDS. I went home and when i read what it was , that was one of the happiest days of my life . I know exactly how he felt when he said he was happy to know what he had. I've now had pelvic fusion surgery , waiting for double shoulder sugery and life is about just accepting it and being happy to wake up in the morning having another day to spend with family and serve God.

[@SecondsOfAnOrdinaryLife]

I recently went to a Podiatrist, and he said, "If you hadn't told me that you had hEDS I would have told you to go get screened for it, your feet are not suppose to turn like that!" I'm happy you found your answers! 😊

[@abetterlivedlife]

If your doctor hasn't recommended or prescribed physical therapy, ask for it. It has made a big difference in my life. So far... 2 rounds of physical therapy for my back, 2 rounds for my hip, and currently working on my shoulder. It's hard work, but it's worth it. I'll be doing it for the rest of my life, but way better than where I was before I started PT each time.

[@kristateufel124]

I was diagnosed at 15 I have had multiple dislocations, body aches, passing out, fatigue…I got so much crap for missing school even when I had multiple drs notes….HSE my former high school had THE NERVE to give me this speech that I’m lazy, I’ll never make something out of myself…another thing that should be brought up is the way schools treat sick children. It’s so sad.

[@dm4859]

My college roommate has EDS, so I have known about EDS. I think we understand that people's disabilities are often not obvious when we go through the same thing. My brain trauma and surgery left me with issues that are not obvious to others, but the struggles are real. I am so sorry there were so many years of frustration for Mitch. Thank you for sharing your story with us.

[@Madampinney]

Thank you for raising awareness for those of us with EDS who suffer in silence

[@ellemarie6731]

Such an honour to be apart of this revolutionary project. Thank you to everyone watching for taking the time to listen and learn ♥️♥️♥️

[@kimhacker4597]

🧡🧡🧡

[@kallykat]

It took me almost 50 years to get my diagnosis! It was hell on earth not being understood, and it being an invisible disease!

[@krystlepark9026]

I have Heds…been struggling all my life. I completely understand.

[@lynaeeakettgreene7208]

I don't have words for the feelings that I have watching this. I was 11 when I caught mononucleosis, and I've never been the same. I'm 36, and I have Hashimotos thyroiditis, which has never covered all my symptoms. I've had every test imaginable, I've had doctors do batteries of tests and then say I'm sorry. I know you are suffering but I have no clue why. I can't help you anymore. I was 20 years old. I'm seriously trying not to cry right now, it's overwhelming to hear someone else voice all these feelings I've had. so many people just didn't believe me. they looked down on me. now my two children show signs of it, and I'm devastated, I so badly wanted my kids to have a healthy life without this pain.

[@mitchellmartow]

So sorry that you've had similar experiences, I hope future inevitable medical advances/treatments help ease the pain of both of us and your kiddies!

[@deathbysnusnu1970]

If you need help or suggestions on medications or types or doctors to see, just ask on any EDS page/ comment section. Zebras are super helpful. We all know how much it suçks to go through so much and be told, "sorry, don't know what to tell ya. "

[@mellomakes]

I’m convinced I am still suffering the aftermath of mono. I’m 47. I got it when I was in eighth grade.

[@Catlily5]

I got POTS after mono when I was 36.

[@bonnylouwho76]

My daughter was diagnosed with mono at the age of SIX. Oh, we have chonric illnesses too. We had thought we might have ED too. Now to find a specialist.

[@tanaadams7793]

I finally got them to officially diagnose my Heds today. I am 52 years old, almost 53 and have often cried myself to sleep begging God to take me in the night or have the mercy to give me some refuge from the constant unbearable pain I have felt my entire life. There is little to no quality of life. At least today, finally having it acknowledged officially, and documented, I have a sliver of hope that something may be offered That could help.

[@kristinahenry1823]

I just watched this last night! It was fabulous. But one thing struck me that I hope Mitch looked into. At the beginning of him becoming really sick, he mentions that he acquired H1N1 flu. Then he mentions being SO fatigued that he was falling asleep all the time. H1N1 has been linked to triggering the autoimmune form of Narcolpesy Type 1 (narcolepsy with cataplexy…although some don’t develop the cataplexy until later). My daughter with EDS also has Narcolepsy. In the narcolepsy groups there is a high number of people that also have Ehlers Danlos. In research it shows that 9% of people with EDS also have a sleep disorder. My daughter JUST started a new med for Narcolepsy called Xyrem and it has been life changing…she has literally gotten a lot of her life back in regard to brain fog and fatigue. In Narcolepsy, the body attacks the hypocretin cells in the brain that regulate the sleep wake cycle. Please pass this information along to Mitch if possible, especially with the link to H1N1.

[@mitchellmartow]

Hello! Thanks for the info! I've had many sleep studies and dim light melatonin tests done and none show signs of narcolepsy, but they did show signs and lead to a diagnosis of Non 24 hour sleep-wake circadian rhythm disorder! My circadian rhythm issues have improved a lot with medications, but I sill have extreme insomnia from my chronic pain (I'm awake over 30 hours everyday and so sleep up to 20 hours). When the documentary talks about me falling asleep all the time, that was over a decade ago because H1N1 swine flu started the pain and no one was willing to prescribe medications to help with sleep until after the EDS diagnosis. Now that my sleep quality is still bad but way better so I don't suddenly fall asleep in middle of the day anymore, instead I can only sleep when I'm ridiculously exhausted/sleep deprived from being awake an eternity.

[@shelib13]

Thank you so much for pointing this out. Nearly 3 years ago I got Covid. I ended up spending the next 2 1/2 years in bed sleeping most of the time. I knew it was related, I have yet to convince the doctors. Actually actually went through the normal list of not getting a good nights sleep, medications,and depression. Makes me so angry that I have to know more about what’s going on than they do. Depression

[@bjdefilippo447]

@@mitchellmartow I also have a circadian rhythm disorder and EDS. I haven't had any luck with sleep medication. I don't know how much of my insomnia is due to my chronic pain, but I'd be interested in what has worked for you for sleep.

[@deathbysnusnu1970]

I have several medications that I try for sleeping. Trazadone (50-150mg) to help my brain to stop running in circles. It's fast acting but doesn't always work for me. I also use hydroxyzine (50-200mg) it's over the counter allergy medication, but it really does the trick a lot of times. I have Zolpidem, but that's a 50/50 crap shoot. But my best is a skeletal muscle relaxant called tizanidine. (4mg) one pill every 4-6 hours during the daytime really helps me with the body and joint aching, and 2 pills at night help me fall asleep. My night time sleeping is all messed up, but if I take it during the day, I'll sleep 6 to 8 hours on it. Weird. Anyway, I digress. Be careful with that stuff. The first time I took it, I misread the label and took 4 pills (yikes!). I ended up with some fun hallucinations and not being able to walk really well. My legs had no strength. I also have another muscle relaxer that I'll take if nothing else is working or I'm out. Hope this helps y'all.

[@mamadusty1111]

With EDS we can have literally loose cells…. The extra cellular matrix (ECM) and the Blood brain barrier can be malformed and effectively looser than they would be in “normal” people. This can cause us sensitivity to our own endogenous chemicals/hormones. That can make us sleepy or keep us awake. Histamines make us sleepy and many of us have known MAST cell disorders (could be related to looseness, but also can be immune response related). POTS can cause us adrenaline surges, and adrenaline can keep us awake. The signaling issues combined with other factors cause us to burn thru ATP (cell energy) faster than “normal” people so that makes us tired. The increased heart rate from pots or other dysautonomia keeps us awake. Pain increases heart rate and blood pressure and that effects our sleep. We go thru so much that drs don’t even understand. I can tell you the cure is endorphins tho- which the drs don’t want to prescribe bcuz that’s opioids. If we were living 500 years ago or so we would just go out to the poppy fields and replenish our depleted endorphin situation, but not an option anymore. It’s so unfair. Every hyper movement of our joints causes an endorphin response, we burn thru our endorphins and are left in hyperalgesia pain and meltdown with ASD bcuz we don’t have endorphins left to address our emotional stress. It’s sad we can’t get medication that would fix us. I know bcuz I had proper medication for about 10 years. Then the government took it away. ADHD medication increases endorphins and helps a lot but medicines like LOW DOSE NALTREXONE or ultra low dose naltrexone should be offered to everyone to try if the doctors won’t prescribe the high level opioids we need. Blah blah blah EDS is lame.

[@CraigsOverijse]

Listening to his Mother 3 minutes in I am immediately flagging up in my brain Austism spectrum disorder with his hypersensitivity to taste and sensation. What a supportive family they seem to be.

[@Vee_of_the_Weald]

I’m not sure I can watch this without getting angry and/or crying, so I’m just going to file it away for now. I’m sure I’m not the only one who has kinda PTSD from how difficult my journey with hEDS has been.

[@coda3223]

I have PTSD for a variety of things, but medical stuff (hEDS, POTS, MCAS, migraine, the gaslighting, being dismissed because I'm autistic and can't communicate the "right" way) has definitely made it more complicated. You're definitely not the only one ❤

[@allsortsacresfarm]

Waiting for genetic testing currently in Ontario. It was my astute gynecologist that suspected I have EDS after learning that I had had multiple internal surgeries that were generally seen in those aged 50+ at a young age. It explained all my pain symptoms, cracking joints, digestive issues, and so much more. I was floored when I learned what a subluxation was and that I've had them since childhood. Thank you for making this!!!❤️🦓

[@r.fairlie7186]

Good luck with the testing! Something I’ve heard from many members in hEDS groups is that surgeons notice during abdominal surgery that all their visible organs are shiny. I wonder if your gynaecologist has seen this but not realised that it’s an EDS “thing”. Two of my most inconvenient comorbidities were endometriosis and interstitial cystitis. It’s good that the subluxation issue was raised as some of us don’t have joints that dislocate - they sublux instead. Both alternatives are listed in the EDS literature but doctors only seem to concentrate on dislocations. Another piece of info for your lovely gynae is that he should look up KZbin interviews with Olivia Newton-John (RIP). She had very bendy thumbs. Not everyone realised that she was Ashkenazi Jewish via her mother (Olivia’s grandfather was Max Born, the Nobel Laureate in Physics for his work in quantum mechanics. He fled Nazi Germany before WWII started due to early signs of their anti-Jewish sentiment. AJ females have the highest risk of breast cancer but it’s not commonly known that many of them have hypermobile joints too. Surely this will become more publicised and doctors may start doing a Beighton test on their BC patients. This link between the two conditions would surely raise the currently under-diagnosed figures for EDS. Lucille Ball died from an aortic tear and her granddaughter recently died from breast cancer. I had breast cancer at 44, given a less than 40% chance to survive 15 years and am 70 next month. I’m a stiff zebra with Scottish heritage who had to wait until this year to be diagnosed with hEDS. I’m regularly presumed to be at least 10 years younger due to my facial skin, am full of tendon, ligament tears and I have labral tears in both hips. All the best from Australia!

[@deathbysnusnu1970]

Wait, I thought that there was no genetic test for hEDS? I know that other varieties have genetic markers. Hmmmmm.....

[@farmfarmdorrie]

​@@r.fairlie7186 Thanks for sharing all of this.

[@kelseybisset88]

​@@deathbysnusnu1970there is positive and non-positive heds, so it can sometimes be detected genetically

[@Catlily5]

​@@r.fairlie7186When you say that you are a stiff zebra what you do you mean by stiff?

[@lovemagicandroad]

As a physician I am very aware of Ehler Danlos Syn. It was very well portrayed in med school. Perhaps not in Canada but in the US in Chicago. I was in med school 1990-1994. What I didn’t know was that there are so many subtypes. Also well aware of Marfan Syndrome. I see lots of people with long legs and arms, very common condition, I’ve seen people just walking around w Marian’s. Runs in families or a new mutation. But I’m Internal Medicine, perhaps other specialties not as aware. 🤷‍♀️

[@jinxedblackcat4609]

R u still in practice I live close to Chicago and would love a dr that knows what I'm going through

[@lovemagicandroad]

@@jinxedblackcat4609 I’m not in IL anymore, left right after med school to do my Residency in CA. Now been living and practicing in California for years. Almost retired now. I’m sure you can find someone locally, or look for a Rheumatologist. Mayo Clinic, Rochester, MN, if it’s anywhere near you has a very good program and doctors overall. I drove there from Chicago. They even have a program where they work up a mystery illness, you stay in their hotel and a bunch of specialists work on you while there. They are considered top diagnosticians in the country. It’s a very excellent place if you are able to get there. My landlady in Chicago took herself there for a better diagnosis, she had heart failure.

[@citizenxxxxx]

My mother, brother, and myself have EDS. My cousin has Marfans. It’s very hard on him.

[@jimjames2391]

This film made me cry more than a dozen times, because this too was, and is, my journey. Thank you to the folks who made this. I will forever share it to enlighten others and to continue to share what is such an invisible to many disability.

[@emilycorwith1119]

There are so many illnesses which are not yet diagnosable by medical science. One day they will be but in the meantime patients and their families suffer unnecessarily.

[@agnieszkakowalska7564]

The way of a hero plus of his family is a beautiful response for a painful fate, a dignity of fighting for saving&improving both our smaller and bigger worlds. So thank you! The dancing girl at the beginning makes an impression of a dance/theatre film, but also gives a sense of breaking the limits, working hard on self development, what is true. The bending girl is an intriguing motive leading us through all the struggle, dark nights and dawns to the moments of shine. It makes this film unobvious.

[@fionawinterfield2635]

Thank you, Mitch, for giving us a voice and for sharing your story with the world. And thank you to every single human listed in the credits for making this happen. Every single one. I read each of your names and sent gratitude as I did. 💛

[@Warriorlamb]

I’m watching this with tears streaming down my face, EDS is the worst thing to live with. I was diagnosed in 2016 with vascular, hyper mobile and periodontal types. I just wish I was diagnosed earlier. I’d already lost a child through complications from EDS

[@elioxman8496]

Hi Mitch, I am father of Daniel Oxman. I'm going thru my own struggle with headache and eye pain (in addition to previous chronic back/leg/neck pain since i was 29). The latest sickness has started in the fall of 2013 and soon after i had to quit my job (an engineer) and devote my time entirely to the search for causes and cure. 5 years later i left medical system in toronto (ohip and private as well) without a diagnosis and any recommendations except cannabis. I stayed on the cbd/thc oil combos for a year and as a result lost memory and ability to focus...i chose to fight rather then be a zombie. i lost connection with almost everyone, was badly depressed and suicidal for some long months....but i was holding on. thanks to a lucky accident (or gift from heavens) i found that my eyes do not hurt when i watch a very small object from a very close distance, of a few centimeters and i could use a knife to make some shapes of wood. it happened on september 1 2016. since that i became a wood carver, a hobbyist of course, but i noticed that being involved in my work i can distract myself from the pain. by now, almost 7 years later, i feel less pain, and while i can't make any significant money i have my days full of creation and rest between times of work to relax my headache and eye pain. i can walk very little, can't read, watch tv or any moving objects, drive etc, but the ability to create something from my own mind keeps me going. i also found out that when i am completely floating in the water my pain gets less and thus i have a place to get pain relief. i bought me a small pool which i use for this in summer and go to JCC swimming pool. i think if i had to i'd make a small heated pool, like in your situation when your immune system is so weak. possibly my experience would contribute something in your struggle for life...life is worth living if you try hard enough to convince yourself in this. do not give up. you never know how the things turn and what new solutions would come your way. it is a unique and one-of-a-kind adventure and only you can make it. don't return your ticket. all the very best to you.

[@citizenxxxxx]

Have you been tested for Sjögren’s syndrome?

[@kellyd.pinon-dill6707]

Hi I'm Kelly I'm 37 and from the US, I have vascular Ehlers Danlos and we are not alone...xoxoxo 🦓

[@CoryBranlafatt]

my EDS diagnosis saved my life, and this documentary really touched a soft point in me. 20 years after the first eloquent symptoms, I was finally diagnosed. I hope with awareness, eventually, young people won't have to suffer as much as we did.

[@gushutchinson8758]

Whatever you do NOT bring my shoes... That made me chuckle!!!

[@jessicamaclean6758]

This is a helpful documentary! The hard thing about EDS and HSD is that they are so complicated and there is too much to cover. I'd add that many of us have never been able to hold a pencil correctly, have long fingers, skinny wrists, and big heads! But we'd be here all day if a documentary covered everything. Very well done and thank you so much!

[@KiahSilverdew]

Knowing what you have is half the battle. Now you can make plans and start trying treatments that might actually help. Being in the lost area of not knowing is maddening.

[@Dejuarez77]

I’m a Dr with HEDS, thanks for your documentary. For my pain I take Lyrica 300 mgs, Atarax 25 mg for anxiety, and Diosmin Hesperidin as a supplement for the vascular fragility and a to. of Salt. I’m self aware I have a poor prognosis (Congenital lactose intolerance), recently self diagnosed of cicical cushing’s syndrome (I got the first symptoms in the 1990 when I was 13, I told the endocrinologist at class that I had that and he told me it wasn’t possible, I have been suffering for the past 19 years and finally I diagnosed my test everything came positive and I hope surgery will improve a lot of my symptoms I’m aware that I will still have some of the symptoms), my Grandma, Uncle and Aunt died with cyclical Cushing’s symptoms, two of my grandmother brothers committed suicide, and my uncle attempted. Hooe everything goes well

[@Deepuppy03]

Thank you for doing this documentary. We really do need to spread awareness about EDS. I was diagnosed with EDS-hyper mobility in 2003 after spraining my ankle around 40 times, dislocating both shoulders numerous times and having prolonged neck pain after whiplash. I went to a rheumatologist who dx me. He let me leave the exam room to pay so he can “look some stuff up and get back to me”. Then he told me while I was online in front of everyone oh yeah, you have EDS. Look it up. Thanks for privacy doc. Lol well here we are anyway. Thank you again.

[@shortlilrope]

I suffer from chronic pain… it’s brutal and you’re right. People call me lazy, fragile, boring… It’s so frustrating. I’ve suffered since I was 13/14 years old and the worst part is when something serious does occur, doctor’s poo poo it. When I had appendicitis doctors accused me of being a drug seeker, and the pain being in my head - even though I was running a fever and my blood pressure and heart rates were elevated. They just get too tired to look for new diagnoses and give up. It’s difficult.

[@Catlily5]

They accused my friend of faking being in pain and sent her home when she had appendicitis. Then it burst and she went back to the hospital.

[@jutta3378]

If it wasn't for all the debilitating pain and other myriad of health issues that come with EDS you could nearly say that hypermobililty is a thing of great beauty - that young girl Toria is such a stunning dancer! I'm only at the beginning stage of getting a diagnosis but watching this beautiful documentary has given me hope.

[@nadiamccall4311]

i used to dance with a girl who could do stuff like that, I was so in awe and a bit jealous of her flexibility. I always wondered how she is doing today (I lost track of her after she married and her name changed.) At the time she didn't know why she had the problems she had, but the flexibility aspect of it was great for dance.

[@kaymack5304]

I was thinking of all the damage she was doing to her joints. Hopefully she is just super flexible and doesn’t have EDS.

[@Susieq26754]

Young people, youth will not last. Life is a vapor. Remember that when you are being cruel to older people.

[@vwillisgeo]

My adult son has hEDS and we feel fortunate that he was diagnosed early on (2011) due to a very knowledgeable orthopedic surgeon who felt his lax joints and knew it was abnormal. One shoulder surgery and three spinal surgeries later and he is still plugging along trying to live his best life when his body allows it.

[@anntunaley9974]

Im 61. I was just diagnosed with Eds last year, yet I’ve had severe pain since childhood. It 12 my joints really started dislocating. Doctors don’t know about it because they aren’t taught about rare diseases. I self diagnosed and it took several years for my doctor to agree to send me to a specialist for testing. Since then, my kids and grandkids have been diagnosed. Im in a wheelchair and bedridden and in constant pain. My joints dislocate almost daily, especially during the night just moving in bed while asleep. Its an awful way to have to live. Theres so much more to this than dislocations. Dysautonomia, chiari malformation, dental problems, autism, and so much more.

[@ElizabethMillerTX]

Relatable. Symptomatic since puberty. Dx at 50. By me. Confirmed by everyone, including experts.

[@katkaplan3]

Took 50 years to put the puzzle pieces together and get a geneticist dx of kyphoscoliosic Ed’s , after living in pain my entire life.

[@staceywoods5933]

I feel so validated! Thank you for being so raw ❤

[@nowistime8070]

this turned out to be really inspirational

[@Deadly_Nymphology]

Currently watching this after my knee popped out again. As a kid I loved being flexible, as an adult its killing me.

[@jrodgers674]

I feel ya. I used to, as a kid, use my body oddities to impress people and make friends and used it to excel in JuJitsu both in terms of training and in matches. I wish i could go back and tell that kid how much that would cost later in life.

[@Alaryicjude]

I'm 40 and I was just diagnosed about two years ago. It's been relieving to know that the pain I've felt my whole life is real and valid.

[@christinaherring9762]

Beautiful. I was finally diagnosed at 46 with EDS

[@SarahWilding]

All of this. A hard and very real watch. All my love to you Mitch. Hats off for doing this documentary x

[@nicoler1183]

I feel so lucky to have been diagnosed with EDS when I was 6. All the things I've gone through because of this disorder, at least I, my family, and specialist doctors understood that it was a real physical illness and not "in my head" or me being "overdramatic." It made it somewhat easier to withstand my peers, and even ill-informed teachers and doctors, who tried to tell me it *was* all in my head. Like I was 'faking' my corneal scarring for funsies, smdh.

[@jeandoojune]

Thank you for this. I’m crying because this is my life. The pain, the mcas issues and for decades no diagnosis or 1001 wrong diagnosis. It finally showed it was EDS after i had my child and all my joints basically gave out. I’m at the point I worry I’ll end up in a wheelchair with central line and all the other stuff to just “live”. I feel heard for the first time. The level of pain is hard to explain and only someone who is going through this understands why someone would want to end it all.

[@deathbysnusnu1970]

Gabapentin and duloxetine works for me with the nerve pain, and tizanidine for muscle and joint pain. Tizanidine will also tone down my screaming nerve pain sometimes. I hope this helps. All the best ~ Just an old lady

[@raggedblossom508]

I found this documentary quite affecting because I live with ME/CFS and the long journey to diagnosis and acceptance is so similar. As are the experiences of pain, exhaustion, and being abandoned and gaslighted by doctors, friends and family. I wish Mitch and all people with EDS the best days possible to come.

[@franciscarebollosa2860]

Thank you for this message. I myself suffered with this disorder. Got diagnose last year. The Genetic test came back I have several mutated gene VEDS, HEDS, connective tissues and now pots

[@greengorillah]

I have a connective tissue problem called Osteogenesis Imperfecta (OI) of which brittle bones are the most obvious sign - but besides that people with OI often have a lot of issues in common with EDS. E.g. joint hypermobility, chronic pain, fragile blood vessels and exhaustion. It is because of that that I find the information on EDS very interesting and relatable since those invisible parts of OI can be really debilitating as in EDS.

[@TheStoniak]

I was recently diagnosed with EDS and my doctor is thinking possibly OI too.. like an overlap… My sclera recently started turning blue

[@greengorillah]

@@TheStoniak There is indeed such a thing described as OI-EDS overlap syndrome. Usually mutations for OI-EDS overlap syndrome are in the COL1A1 or COL1A2 genes (like most OI mutations), but those for OI-EDS overlap tend to be situated more towards the end of the gene.

[@nellafoots2251]

KZbin: here watch this. Mitch: I put a song lyric on facebook when I was desperate and almost ready to die. Me: oh I remember doing that with that song Mad World. Mitch: quotes the exact lyrics I posted as well. Well that's me gone. I suspect I have EDS and this validated me beyond belief, thank you for posting.

[@ProbablyBees]

I'm currently on the 2 yr long waiting list for EDS assessments. I developed joint pain and severe back pain at age 10 but no one took it seriously. Took till 23 when I learned about EDS and how my digestive issues, stretchy skin, all of it was possibly the same issue.

[@millename]

Why does it take so long to wait? What country are you from?

[@Evelyn_2401]

If only the Australian government was as proactive about this sort of thing as the Canadian government. I'm happy you've made such a difference for all those people, helping being about that clinic.

[@tahliajayde]

Yes! I can't even get past my doctor who seems to think it isn't an issue because blood tests look ok... 😭

[@SimiSilver]

@@tahliajayde Blood tests aren’t used to diagnose EDS

[@caitlina9852]

@@SimiSilver I think that may be Tahlia’s point, a lot of Australian GPs just send you for a basic blood test when you go in complaining of symptoms, and dismiss you when nothing shows up (despite the fact that many things won’t show up on there, including EDS as you pointed out) 🙂

[@shannongreenwell1278]

I have EDS, and this makes me feel like I am being understood by someone! These medical professionals want to think that we’re “ nuts” or that “ It’s all in our heads “. Well, Yeah we have something in our heads: BRAINS, something that they NEED To go find! We’re NOT lazy, WE ARE IN PAIN! People just won’t GET IT UNTIL THEY GET IT! I have Classical EDS( cEDS). I got my Dx from my Neurologist. It took me 48 years to find out that. I was born with it, and my mother had Osteogenesis Imperfecta which shares the same genetic mutation with Classical EDS. That’s how I got my EDS, and it’s just like the same thing, soft, doughy, easily to bruise, I dislocate / subluxate my joints. I have Dysautonomia and Migraines and GERD. And yes, there’s no cure for EDS and in my case the only treatment is Naproxen and PT. Now my young niece is being tested for EDS. Her mother has Osteogenesis. I think they should have a National EDS Day where everyone dresses up as a zebra 🦓. They go all out for National Ice Cream Day or Pie Day. Why not go all out for EDS? I wanted to be a Phlebotomist and work in a veterinary clinic but that’s been taken away from me due to my EDS and my Epilepsy. Believe it or not, Epilepsy is linked to EDS now. I use a combination of a Rollator and a walking stick or a wheelchair ( at my church) and my walking stick. Just because I can sometimes walk fine one moment doesn’t mean I can walk fine the next minute. People like to ASSUME they know how we feel day to day, and they DON’T!

[@magentamagenta1274]

Pain is personal to the person that is suffering, it’s invisible and it’s nuanced. The problem is with the people that fail to comprehend other people’s suffering until they experience pain themselves. Empathy is lacking in many people, often people that lack in empathy work in caring professions. Some people that lack in empathy are also people in pain themselves. I had experience of someone who takes opiates for fibromyalgia dispute that I have this condition because I don’t take opiates and have a holistic mind and body pain management program. I find exercise and fasting have helped me immensely. I believe mitochondria regenerates from exercise and fasting. I do a lot more but these two practices are very helpful.

[@MNW-Raven]

I have Heds and live with chronic pain an fatigue daily along with my FND. I have also pasted the hypermobility down to my daughter whom has started to show signs of it getting worse an more painful as the years go by.

[@lifescalling8080]

I just want to thank everyone who put this documentary together! We need more like this! My son is 15 today and dealing with hEDS with multiple comorbid conditions. I discovered EDS when he was 5 but it took years to get a diagnosis. For some reason their seems to be an agenda to make it harder and harder for people to get diagnosed. Between the narrowing of criteria and the reluctance of doctors, it often feels like there is some sort of conspiracy to deny this condition! Even family members deny it! I will never deny my son’s reality or cause him to doubt his own sanity! I have chosen to educate myself. I only wish more people would!

[@jodylwallace]

Yes, 68 and just recently getting an assessment for hEDS.

[@fionamainey7686]

It's been 10 years since my husband was diagnosed with EDS. He is also high functioning Aspergers.

[@coda3223]

Eep. In case you didn't know, functioning labels serve to refuse supports to those who need them and to infantilize autistic people. It's also a signal that reinforces autistiphobia. In 2013, the DSM was updated to eliminate the asperger diagnosis and update the autism diagnosis to more accurately reflect the common experience of both diagnoses... also Hans Asperger was a literal Nazi who knowingly sent autistic kids to their deaths. I bid thee good day!

[@that_one_who_is8037]

Both the terms ‘high functioning’ and ‘Aspergers’ aren’t used anymore, as they were created by nazi Dr Asperger to sort which people with autism should be kept alive and tested on, and which people with autism should be killed in the gas chambers. There is no difference between autism and Aspergers, other than the criteria that was created in nazi Germany, so it was officially declared not a medical condition years ago, instead replacing every diagnosis of autism or Aspergers with ASD (Autism Spectrum Disorder) The terms high functioning and low functioning, actively invalidate the people the terms are being used for, as they will both struggle with completely different things, but one gets told that their autism is ‘lesser’ because they can hide it easier. This is not me trying to give out to you, or start an argument, this is just me informing you on the harm of both terms, just as i with i was sooner. I was diagnosed myself with Aspergers and was sick to my stomach once I learned were it originated from. I would also be called very ‘high functioning’ even though I struggle through everyday life, and mundane things others wouldn’t think twice about. I don’t take it personally, but I know others who suffer from these functioning terms far more than I do

[@that_one_who_is8037]

What you do with this information from here is entirely up to you, I just thought that you and your husband should know at least

[@india1422]

I have chronic pain. Of course it affects me mentally,but I still need treatment for the pain as well as psychological support.

[@F1NG3RS]

This documentary gave me so much validation and many answers to common questions people have about EDS. I've struggled with hEDS the past few years. Brilliant. Painful. Real. Thank you.

[@marycasper9733]

Love this, hoping my family and friends will watch and see why I decline invitations sometimes. Thanks for sharing your stories and educating others about what we go through.

[@kimleon-guerrero9980]

Thank you for this documentary I am saving it to share. I was finally officially diagnosed this past year at age 66 with hEDS. I believe my late mother had it too as she shared so many of the same symptoms as I do. Sadly she passed at age 93 still wondering what was the cause of all her symptoms and chronic pain. I found out about EDS when researching her cause of death ( an abdominal aortic aneurism ). That’s when it all came together what was the cause of all our issues. I do my best to bring awareness. I often think to myself……if only we knew.

[@mette1972mho]

You absolutely nail the issues 🙏🏼 I’ve been bullied by doctors, physiotherapists, children in School etc., because I couldnt do things as expected, and I did not react as they thought me to do, in relation to training etc. They Think that I dont fo my traning, because I don’t buld muscles as others. My mental State has been very low, because I felt (and feel) so slibe with my EDS. Thanks for making this documentary - It Will help me feeling similar to others. In Denmark, where I live, the doctors are not trained in EDS either.

[@Mdme.X]

Great documentary. Things do become very painful as time progresses. Debilitating. The interview @ 31min was touching. It describes me to a T. I live in rural area; MDs out here don't know EDS. They know basics. If they're good, they're close to retirement so not up on all the current med research, knowledge base. Anyway, it's very true: we are judged. We are dismissed as weak, emotional, broken people. I've walked with a cane for 9yrs now. I have a walker. I'm on pain meds. It is hell on earth. I lost my career. Everyone dismisses me. My wealthy parents, bring me and my daughter their expired foods to eat... meanwhile they give the church $1k+ per month. That's a micro glimpse of my life currently. Oh yeah, I'm adopted into my family, so no one else has these features.

[@stephanierenee710]

I could only make it 15 minutes into this. It’s so heartbreaking. I’ve been living with this my entire life and all I’ve ever heard is that I need to get over it and I’m just a baby

[@mitchellmartow]

I promise it has a happy ending! 😉

[@N0N4M30]

Same unfortunately that’s my life as well ..