Issues With My Tissues (Feature length Documentary)

[@myniaroo3294]

Dear Lara, I've 'known' you for years as the driving force for EDS research around the world. But today I finally watched this and now I love you. As a fellow hEDS warrior, this documentary really says it all. I was ugly crying at the end. Finishing the last 13 miles on a fracture - you just proved what superheroes EDSers truly are. Though if i was your parent, I'd have tied you to a chair and forbidden you to do it! Thank you for being out voice and our advocate. Love and gentle hugs, from a zebra sister x

[@TheBeatjunkee]

I was just diagnosed officially yesterday at the age of 46. I do not know why this illness did not present in this severity when I was younger but for 10 years I have had increasing pain that became chronic and limiting in 2020. After having a horrific flare that left me bedbound for 5 weeks in Feb I finally got diagnosed with hEDS at Mayo. I had never even heard of EDS until 2024. Your video is very inspiring because I do miss my old life so much and its so true about this condition making me live in the moment more. And that has actually been a silver lining for me.

[@nicolelauderdale3919]

This is me exactly !! I hope you are finding a balance . I am always hurting myself and over doing it

[@AnnaDillon-k1q]

Thank you for making this documentary. This is the best thing I've found to share my diagnosis to family and friends. I cried through most of this because at 50 i was finally diagnosed. 30 years of hell in the medical community and the damage is as you might imagine. I can now share this and I will forever be greatful. I don't feel invisible anymore. Thank you doesn't seem enough to say but Thank you

[@LaraBloom]

Thank you so much ❤

[@jacklynazure689]

You're an incredible, wonderful woman😊 Thank you so much for documenting a part of your journey. Just coming to terms with my Heds diagnosis after 26 years of chronic pain, some hypermobile joints, vertigo, palpitations, now GI issues, etc., Wishing you all the very best, and sending gentle🤗🤗

[@Urbanmantraart]

I cried like a baby at your end statement 😢❤ I'm in the process of getting a dx

[@DougKremer]

You were a hero to all 🦓 for this. You continue to be a hero in your current role.

[@radioturtle]

Stubborn must be a side effect of EDS! I have a broken back and I broke my pelvis delivering my second child, but I went on to have two more kids. I'm still working too. Today, I'm getting over a lung infection, but I'm working my early morning shift at the radio station. Thank you for making this wonderful educational video! I feel like I belong somewhere. We are definitely stronger together. When I feel frustrated in physical therapy, I will think of you and your determination to keep going. Never going to walk a marathon though. Nope!

[@jillgriebel910]

Thank you Lara for bringing awareness to EDS. I was diagnosed this year at age 55. You are an inspiration!!

[@LaraBloom]

Thank you so much! That is very kind :)

[@larabloom1922]

Thank you!

[@hmariekoehn]

I was just diagnosed with EDS a little over a month ago. This documentary gave me hope during some of my darkest days.

[@nancyblock6106]

It made me very sad when at the EDS conference in Nashville you said people have said horrible things about you. I wish they would watch this video. You are amazing!

[@rhwalker2011]

Something I thought about the other day. EDS was probably at one point a rare thing, but because of the lack of diagnosis in earlier generations, more and more people now have it and its not as uncommon because its been passed down so many times. Its been such an ignored syndrome and so undiagnosed that doctors don't see it for what it is. I was diagnosed at 31 after an entire life of doctors never knowing what's wrong with me, I was too complicated of a case. My own kids are now showing signs of EDS. It makes me sad but I'm also their biggest advocate now. Thank you Lara for all your amazing work and raising awareness and helping to make EDS more known around the world! You're so inspiring and amazing.

[@triciahalstead26]

Thank you so much Lara for making this documentary, I can’t believe I’ve only just seen it (after your talk with Zebra Club). You’re amazing and I’m so grateful for such a validating video showing the realities of life with EDS/HSD. But while also remaining positive! I’m determined to enjoy all my good days ❤ thank you for all you do and have done 🦓 💪

[@annesmith3875]

I only found this documentary yesterday - 6 years after it was made. I was diagnosed with Ehlers Danlos Hypermobile type in my 60s. I am now 70 and remember suffering from inter alia ankle pain as a child and having numerous problems with my feet and legs and shoulders and hips during my working life. One unhelpful employer in the legal world told me I looked like a duck because the skirt and heels in which I had to work made my feet so sore that I walked awkwardly. This film is so helpful. There is very little knowledge in Scotland compared to England. This is very hard for Scottish sufferers. After listening to Prof Grahame it appears that many of my unexplained symptoms, gastro intestinal problems and many more, as well as previous surgeries, were/are directly due to the condition. I have pain every day and I sleep intermittently during the night because of pain. I now realise that both my mother and my maternal grandmother were, undoubtedly, sufferers of this condition, but were never diagnosed. I just wish that there was joined up knowledge in the UK (not just in England). If it weren’t for my privately funded physio, and the internet I don’t know where I would have got help. A big thankyou to Lara and the production team.

[@LouisaWeez]

There's not words to express how grateful I am for you and all you do and that you made this documentary. I hadn't heard of EDS until last year and was diagnosed last month (using the classification you co-authored) at 27 after a year of increasing pain and limiting symptoms. I hadn't heard of you until today when I saw a targeted instagram ad. For the first time since I was a teenager I feel hopeful that I can push through and achieve whatever I want to. Thank you for sending out those ads to reach people like me. Thank you, thank you, thank you

[@LaraBloom]

Thank you so much that means the world ❤️

[@eyiapandora3933]

Congratulations Lara! Thankyou for spreading awareness of us zebras. I was diagnosed at 36 and my physiotherapist has advised that my hEDS body is better suited to interval type training rather than long-haul marathon type exercise. Never stop being active though or we lose the muscle tone that helps compensate for our ligament laxity. Sending spoons to fellow zebras out there to keep going with whatever challenges you are facing and for the goals you hold.

[@sloene72]

Thanks Lara. Really easy to understand and relate to, thanks to you and your team, your friends and family etc for making this movie. You have a strong personality and determination about your life, yea dont give in to not living your best life. Do what you can, and when you want to enjoy your Birthday so you should at least a bit, youre not stupid, maybe stubborn but you wouldnt get this far if you werent.

[@Cheyscrochetshop]

Thank you for this. I've been motivated to reach out to a genetic counselor to see if I'm dealing with Eds like I presume I am.

[@joeynarciso94]

@cheyscrochet, I wouldn't worry too too much about the genetic testing necessarily unless you have sx of vEDS, the most deadly form. For starters, by far the most common form of EDS or hEDS does not yet even have a genetic marker yet or at least from what I have heard, it is not yet prime-time ready. In the meantime I would just really take note of what is going on with your body including your GI tract and be aware of the numerous co-morbidities that so frequently are associated with it particularly the dysautonomias and MCAS. Be aware of your orthostatics by monitoring your vitals in standing, utilize the NASA lean test (see Bateman-Horne Clinic or Lucinda Bateman videos), monitor where you're at with the newer Beighton criteria standards, and just learn as much as you can about yourself. I doubt you'll find anybody else who cares as much about you than you do.

[@firecrackerberry7833]

Way to go Lara! Love watching the awareness you spread for us zebras. I was diagnosed at 34, only when getting my 3 teens tested. All 3 have it and its just a nightmare for us all. Keep going 😊

[@Luceisamisfit]

Thank you so much for making this documentary. It’s incredible. I was diagnosed with hEDS last year and this is the first time I’ve seen myself represented. This is such a great resource for others to gain a real insight and understand. Thank you so much for sharing this.

[@joeynarciso94]

@lucieisamisfit, it is now August of 2024 and although your post tells me it was written 2 months ago, I don't know when it was actually written. Of course I don't know where you are located either and both of those factors cause what appears in our Google and YT searches to vary widely but at any rate, there are actually a 'ton' of videos out there or rather here now at any rate. Interesting ....

[@joeynarciso94]

As an OTR or retired OTR or even just as regular old bendy me at age 73 with all my ligamentous tears, 12 spinal fractures, nasty falls, and simply all the rehabbing I've done as a patient, this whole concept of even thinking about abusing one's EDS-addled body by considering pounding the pavement like this in order to complete a marathon just totally baffles me. Why even exercise like this when there are so many other alternatives that one can partake in that can help rather than harm your body??

[@FreggFaerie]

I finally took leap. I sent this video and a long message to my family, in hope they will get tested, and also better understand me. I'm proud of myself, but I'm also shaking. Thank you for making this possible, Lara, I don't think I could have reached out without your help.

[@juliefarrell3957]

My mother died at 50, i was 20....in her bible was a slip of paper that made me cry 😢 all it said was...who will take care of Julie

[@mmorgan9799]

Oh, my heart... 😔❤️

[@medinasanders]

Gggggg vooooy

[@melissafarrugia9531]

Bless you beautiful lady

[@diggattimodeste]

Ditto, but I was 22 and mother was 54, I was her carer, hardest day ever. I have Eds-Chiari

[@HeyJudie]

I'm not ultra hypermobile and don't experience full on dislocations, but I do have subluxation in my shoulders and it's caused me severe chronic pain. I've been diagnosed with both heds and fibromyalgia.

[@AshleyBrownson-c9v]

I am officially diagnosed with EDS. Prior to this I purchased my own genetic testing for connective tissue disorders. I tested positive for a variant that causes theronine (+) to change in to proline (-) . Others in my family acquired a congenital heart defect from this as well. Long story short one of my positively charged amino acids gets automatically changed into a negative amino acid. Two negatives Do not connect unfortunately… I tell Some people my body magnets do not work

[@victoriashepard8176]

Found this on my EDS Facebook page today. Will watch it tonight.

[@pbl121]

Thank you Lara, this was the most validating thing ive ever experienced. From seeing my same physical pain to hearibg your loved ones and doctors saying the same things mine say to me! Congratulations on being a EDS Warrior. Thank you for being just like me. I fell less alone.

[@julieshenk7640]

I see myself in this with many mini-marathons (in other ways) completed. Some were not wise. Just freshly diagnosed H-EDS at almost 68!!! The symptoms are escalated but now make sense. Thank you for caring, sharing, imparting info with passion/compassion in what you do.💕

[@LaraBloom]

Thank you ❤️

[@erinwilliams2095]

Finally someone I can relate to. Thank you for your inspiring, real and raw doco it explains what we go through and the mental and physical resilience we need to have an ordinary yet exceptional life. Thank you 😊 🎉

[@staym925]

I feel your pain, this condition sucks, im now 43 and have had issues my whole life, and hoping for something to become a treatment someday. What bothers more than anything, is the fact that i passed it on to my children. This is how i figured out that i have eds, i went to doctors over and over, trying to find answers, but they just kept looking af me as a drug addict looking for drugs, even though i kept telling them i also have issues with my stomach and many others, finally after my daughter finding out that she was diagnosed while she was serving in the army, and was discharged under medical discharge, they told her she has eds, mcas, and pots, it finally open the door to give me answers, and seeing it in my son also, it brings tears to my eyes, knowing they have the same. I served in the Marine Corps and it was struggle as it got worse, and more and more my body breaking down and more pain, i couldnt keep going. Thank you for showing the world what we deal with everyday.

[@GovilGirl]

Thank you for sharing your story! I am near 50 and the docs I see think it is all in my head - including physical manifestations of rashes and swelling like I am causing it somatically bc I have high ACE scores. Maybe cptsd doesn't cause EDS but having EDS and getting medically gaslit for decades causes medical-ptsd?

[@staym925]

@GovilGirl I also have cptsd, I was physically and mentally abused as a child, I had a rough child hood, i have spent many days, videos, articles, and doctors looking into eds, and it's not caused by PTSD/CPTSD, it is a genetic disorder, and from what I've been threw, alot doctors have never even heard of eds, mcas or pots, and fail to even look into becausr they are lazy, and fearful to step outside of their bubble, I have seen doctors that won't step outside thier bubble and ive Sen doctors that will go to the moon and back to find answers, best thing to do is look on internet and find a local doctor that specializes in eds, or a genetics doctor, but you can also pay to have a genetics test done, it won't show eds but it will show alot other things that will help you build a case. I have found that I have been my biggest help, by doing all research myself, and learning everything I can. I hope you get answers and help.

[@GovilGirl]

@@staym925 But isn't just saying it is a somatic disorder stepping outside their bubble of training? - especially bc there are not really ANY specialist who treat somatic disorder except Dr. House on TV.

[@kathleensimpson7369]

Thank you Lara for all you do for our community.

[@larabloom1922]

Its such a pleasure :)

[@emilyohara7275]

Lara, you inspire me in so many ways! I have cEDS and vEDS. I would love to meet you! I would love to be able to talk to someone with EDS that I can look up to. Thank you for everything you do!

[@clairelurquin]

2 types in one diagnose?

[@thegracklepeck]

​@@clairelurquin it's incredibly rare but some people inherit a faulty gene from one parent and a different faulty gene from the other parent.

[@clairelurquin]

@@thegracklepeck thank you for the answer.

[@GovilGirl]

Thank you for this! You had me in tears and cheers!

[@suzannesobell2379]

your mum and dad told me about EDS this morning and i have just watched your documentary.. you are truly inspirational ....and yes will be donating

[@LaraBloom]

Thank you so much!!

[@micuchua70]

Thank you for this video. I have the same pain and agony as you have in the same hip, knee and foot. I also have the same problem with my heart. My neck and my hands are in pain constantly. I understand you completely. You’re so brave that it’s contagious. Congratulations 😘

[@jorothbaum4114]

Thank you for sharing your life and journey Lara, what an inspiration and crazy can do attitude. I looked this up as I am a therapist working in chronic pain and I am meeting a young person whom I have suspcion of EDS with hypermobility syndrome. I love that you are not scared, that you own your life, ups and downs, and while I know we only saw a fraction of the story, what a ride!!! Bless you and good wishes to you.

[@genewarren2820]

As someone with Hypermobile EDS, I appreciate you taking the time to try to understand this more. No doubt the person you are treating will benefit due to your desire to learn more about this. You are much appreciated, and I hope you can share what you learn to more people in your profession.

[@patriciascheri4910]

This is amazing to hear that a therapist is actually learning of the challenges of EDS Including the suicidal ideations We need more of you in this field taking lead Please try n get the family on board. And if you can get a geneticist on board to rule out other connective tissue illness Lewy diets. Remember your patient is home alone on their pain So pain management is very well needed. Thank you I wish you were my therapist psychologist psychiatrist Please spread the word on this and all the comorbidities thst go along with this painful illness.

[@patriciascheri4910]

I’m 57 Fibro diagnosed 30 years ago There is no way I can at this point walk I’m wheelchair bound Your in pain all the time. What’s the balance I can’t move Invalid life Isolated With to many other conditions to even write down Severe spinal stenosis, and they won’t touch me. No surgery Weakness heaviness Neuropathy neurogenic orthostatic hypotension PoTS Lyme!!! That is what triggered the pots 3 placenta previas Last I was bleeding out I’m telling you this illness Makes you wonder How much of a pardon Can 1 mother be on her kids My son I feel has it but to stubborn to

[@meggypigeon6030]

I found your video last spring and I had the wonderful opportunity to be a part of the 2021 Summer Virtual Conference. I have to say that hands down you are inspirational and honestly the best moderator/host for a conference that I have ever seen. You are instrumental in spreading awareness. Thank you Lara for all of your work and passion.

[@LaraBloom]

Thank you so much for your kind words ❤️

[@teresareinert8271]

I’ve suffered most of my life and Dr after Dr did not catch this diagnosis. My geneticist diagnosed me with Hyper EDS. I’ve had problems all over my body. Spine/ heart/ stomach and joints. I’ve been down so bad I used a walker in the house, electric scooter outside of the house. But I walk on my own right now after getting a minute man surgery.

[@dawnlaughlin4873]

Lara Bloom - thank you for this!

[@LaraBloom]

Its a pleasure! :)

[@TheBestStartClub]

Thank you so much for everything you do to bring awareness to the world about EDS. It's is such a cruel debilitating condition. This video is so inspiring. You are are truly amazing.

[@LaraBloom]

Thank you so much!

[@amysnowoconnell4924]

Inspirational. Thank you for showing us what’s possible xx

[@NicoleHurka]

Congrats! @ 58:27 I've thought so many times to myself "I feel like $#@! ... oh, my pills! That's why!" 😂

[@brandyreale254]

Amazing job and thank you for sharing your journey.

[@sissam1722]

Woooow, thank you soooo so much for this video, it gave me hope and I felt understood. The last two weeks I've been really struggling with my illness but I will keep fighting and live my good day to the fullest😋💪

[@larabloom1922]

Thank you so much, that is very kind - stay strong!

[@joeynarciso94]

I seriously don't get why more folks with EDS and/or the dysautonomias do not utilize the Pilates reformer machine for exercising as opposed to the Levine protocol used by some PTs and such and whatever all the folks on this video are doing. Really makes no sense to me doing a marathon and I was a rehab therapist myself (OTR). There are certain parts of the country here (USA) where you will find some Pilates equipment on most every other corner and PT clinic. Mostly I've noticed that in the Bay Area and in Las Vegas. Those machines can be so amazingly versatile insofar as nearly infinite adjustability for rehabbing as well as such a wide array of possible exercises that one machine, the reformer, is in itself just a godsend.

[@lynnebasso2610]

Way to go, you are such an inspiration

[@lauraopry6012]

You are such an inspiration and overall wonderful human being. Thank you for being a voice for all of us.

[@LaraBloom]

That is so kind - thank you!

[@franlats0705]

Thank you so much for spreading awareness, I have a hsd diagnosis at the moment with appointments for rheumy etc to confirm eds due to other issues than just our bendyness

[@larabloom1922]

Good luck with everything!

[@mariascullion]

Unbeknownst to me I did the Great North Run (walk) with hEDS. I wasnt diagnosed until a few years later. A few of my work friends ran it, but that was never an option for me. I'm really glad I did it then because I definitely couldn't do it now.

[@jenn5594]

I was diagnosed with EDS after suffering for years with dislocations and gastric issues. I was finally hospitalized in January of 2017 with intussuception, which is when your intestines telescope inside of themselves. I was finally diagnosed and I have been able to manage my pain and issues. Raynaud's phenomenon is a bitch and a symptom that drives me bonkers. Still have dislocations about once a month which I've learned to accept. Hopefully there will be more research in the years to come and we will be able to get better treatment.

[@aloevera0.0]

I’m gonna cry that was beautiful

[@JulieAdams98]

Thank you so much for sharing your story! "Make your own finish line."

[@ruparkyitin]

It is not to overdo. It is to Live life in middle way ! You must try to understand (know) your tissues limit.

[@sammillar3739]

I’d love to meet you and invite you to one of my competitions. I have EDS (still need to get more testing. On the surface, I just know I dislocate a lot and ligaments shift into different tracts.) I went from unable to climb monkey bars without my shoulders giving out to training and competing Brazilian Jiu Jitsu. It’s been a struggle since my cardio is crap and I have little muscle, but I’ve learned how to adjust for my body’s needs. After getting diagnosed, I’ve learned how to heal from injuries much faster and more completely. Of course nothing really goes back to “normal,” but you take what you can get. Thank you for sharing your story and the stories of so many others.

[@mariesangelgraphics9643]

you only went and bloody done it!! well done lara x

[@purplepassionfreedom1352]

Your determination is incredible Lara. Well done. I have had a long battle with rude rheumatologist, GPs who think I’m nuts and a family who don’t know what to do to help me. EDS was not on my radar until I saw a senior rheumatology nurse who said “ I think you should push your doctor to look at connective tissue disorders”. I have been investigated for PsA, Sjögren’s syndrome etc but no one mentioned EDS. When I researched, it all fell into place. I am extremely hyper mobile which caused no end of fun as a child but none now, my jaw dislocates, I have terrible bowel issues, I am in severe daily pain and have terrible palpitations and SVT. My hips and foot are full of bursitis and are agony. Small injuries don’t heal. The list goes on. I desperately need a good, knowledgeable consultant to help me. If you read this and have any suggestions I would be so happy if you replied. Thank you x

[@LaraBloom]

Please email us on [e-mail] at any time for help and support x

[@notjustanotherguy739]

What a great documentary! 🙌🏼👍🏼 I can relate so much. I come from an athletic family that’s always tried to get me into sports, and I tried running for a few years. I got quite good but I never improved as fast as the others, and the more I exercised the weaker I seemed to become. Then I got such a bad knee and calf pain that I had to stop running for good. Nobody ever understood why, they thought it was an injury due to running too much but it never got any better, despite rehab. I also fainted every day as a child and my mom took me to the doctor but nobody could explain it. My stomach was cramping every night but nobody had an answer to that either. Not until now, at the age of 29, I went to see my doctor due to gastrointestinal issues, got diagnosed with IBS and a few months later my knee just broke. I didn’t do anything, but it felt like it had literally broke. Not the first time, but since I’ve now found a doctor that I trust, because she is the first one that actually saw what the issue with my stomach is, I booked an appointment thinking she might be able to help me with my knee as well, or she might at least have a clue as to what it could be and refer me to someone that can help me because I’m still in my 20’s but can hardly walk some days. Literally within 5 minutes she said: This looks a lot like hypermobile EDS. So now I’m only waiting to hear from the specialist that will possibly diagnose me, and I finally understand why I’ve never been able to exercise like everybody around me, why I have to rest often, faint and can’t eat, have daily headaches and joint pain/issues etc. I feel like Pinocchio without his strings, lol. The only thing now is how I’m going to tell my family because each time I talk about my health issues they accuse me of being hypochondric and silly, say I should stop complaining and just exercise even more to strengthen my body (which my doctor said I should NOT do, she said I must be careful and should see a physiotherapist to learn how I can train my body in a safe and helpful way), but they will probably not understand I’m afraid. Even if I show them the papers they will still say I’m the bad child that got everything, but I’m glad for myself that I’m finally finding answers to all my questions. I can finally start treating my body in a better way and hopefully be able to preserve as much strength as possible as a get older, because if you don’t know you have EDS - as they said - you just go on and on and eventually hurt yourself unnecessarily... Oops long comment but yeah, I just found out and I have nobody to talk to.

[@ambermichelle921]

I completely relate. People always just tell me to exercise more even though my doctors and I know that regular exercise isn’t the answer. So sorry for what you’re going through. Let’s keep pushing through. Sending love.

[@melissafarrugia9531]

Please don’t apologise for the long comment, it is appreciated and it is not easy feeling so alone. It’s really helpful to us all to listen and to share what we are experiencing. Heaps of strength to you ❤

[@teresareinert8271]

What a champion

[@Kaliincarnate]

Great documentary. Which Don Joy knee brace was this? Thanks

[@larabloom1922]

It was custom made for me but they are great, if you let them know what you need they will help you find the right brace.

[@Kaliincarnate]

Awesome thanks!

[@Dahaliz85]

I used to run marathons until I was diagnosed with cEDS when I was 34, unfortunately, several doctors requested not running anymore. The last marathon I ran I knew it was going to be the last one, it was at San Francisco and I ran thinking about I got EDS and I can work like everyone else with extra care.

[@pinkieskeelo]

Thanks for sharing this. 🦓🖤 you’re a badass!

[@kittenclawsguitarvideos6147]

I have eds and chronic pain.i find swimming is the best exercise, and light weights eases the pain.it is a hard thing to live with.there is no pain like dislocating a jointand by no means do i walk on slippery sidewalks.

[@larabloom1922]

Swimming is great :)

[@dundercola]

Swimming is the only thing i can do.

[@sueligwiazdowski2982]

told myself i wasn't going to cry.... that didn't work out

[@joeynarciso94]

Now in summer of 2024 there are 13 known typesof EDS.

[@summerlea1026]

Well Done ❤️

[@FranchesaVideos]

Just saw it in Nashville,TN great job.

[@Needless2say]

Its interesting that copper is a cofactor for Lysil oxadase the enzyme that bonds elastin and collagen together.

[@melissafarrugia9531]

19:00 You’re so beautiful even with the extra weight, you are gorgeous 32:00 I have the extreme weight loss, filling up very fast etc, low caecum, and have been seeing a nutritionist regularly, but the endocrinologist said I agave an eating disorder, I’m 47 years old, around 37 kilos now so extremely underweight I eat as much as I can even pushing myself for extra mouthful’s even when I feel full. It takes so much effort and time to gain weight but I can loose it really fast, so every time I gain some, I only have to get an infection or gastro and I can loose it all fast. It’s always been difficult gaining but it’s getting more difficult over time, so I feel extremely exhausted and fatigued. I have a geneticist testing soon, and I am quite positive it’s Ehlers Danlos syndrome that I have. Thanks so much for sharing your experiences with us and Thanks Lara You are amazing ❤

[@veronicamorris3413]

I would love to be able to understand this better if it had captions so it was accessible for people with other types of disabilities. Disability solidarity!

[@Daculaboy]

There is literally a closed caption button (cc) on the video.😂

[@mirandawhitten5254]

I’m suspected to have hEDS. I’m 17 and my symptoms have presented since I could walk. Including late toe walking (I was around 6-7 when I finally stopped toe walking) I started having chronic pain at 9 in my ankles that moved to my knees when I was 13 and my hips when I was 15. I’m now almost 18 with no official diagnosis. I’m hyper mobile (my biggest symptom) and have several other symptoms and what would be considered side effects of hEDS. After 20+ doctors and living in 4 states I finally got in with a nurse practitioner just to do pre college stuff. We told him about my joint pain and how we had ruled out sprains and arthritis and how my knee was constantly hyperextending. He immediately brought up EDS but we didn’t have much time in office to discuss it. I’m going back in spring and hoping that my list of 24 symptoms will be enough to receive a diagnosis.

[@cuteSaza21]

I'm trying to get a diagnosis, I'm wondering if I need to have someone in my family with eds to get diagnosed? I have one sister who is hypermobile (with no pain) but thats it? Love you all!! ❤❤

[@cuteSaza21]

As in, since I don't have a family member with eds, will that be a barrier to diagnosis??

[@LaraBloom]

No it won’t, family history is important and in the criteria, but you can be the first person in the family with it.

[@Needless2say]

Why are there eds, cancer, alzheimers etc associations? And not magnesium, thiamine, niacin, copper, retinol associations?

[@camilacampos6948]

❤❤❤

[@savyy4minnie]

I just have to say that in the U.S. she wouldn't have gotten that treatment for her chest infection, she would have been given an oral antibiotic and sent home. Also all the doctors telling her all the risks in doing the walk, you'd never here that here. We would be told it would be great exercise and we should run and not walk. It makes me emotional too see how different EDS things are handled in other countries. They honestly leave us to die here.

[@lisadevlin4288]

She wouldn't have got that treatment in the UK as a matter of routine either. The medical help in this video is not representative of NHS medical help for EDS in the UK, which is appalling. Lara has access to the best private doctors and private EDS specialists in the world because of her position and profile as CEO of the charity. This documentary is so damaging and unrepresentative of the majority of people with EDS.

[@savyy4minnie]

@@lisadevlin4288 She wasn't in her position at the time this was made. It may not touch on that subject because she was sponsored by many of the people she saw for the race. But it is a great way to show at least a part of the disease to someone not willing to listen to you try and explain things to them. Everyone's experience with this disease is very different. They did a great job of making that clear, but they aren't going to be able to make every single point in one one hour documentary. I would hardly call this damaging considering everything else that is out there.

[@lisadevlin4288]

@@savyy4minnie No, she didn't work for the Ehlers-Danlos Society then, but she was CEO of EDS UK at the time, which was the post she held previously for many years. Suggest you do some research. That doctor she's shown consulting in the video is Rodney Graeme (now retired), the top EDS specialist in the country. She's given free braces, and clearly consulting a private physiotherapist. Most people in the UK with EDS who are reliant on the NHS do not get to do this, and could never afford to do so. Your comment implies that this documentary shows that healthcare provision for EDSers in the UK is good. It's not, it's woeful, and this care is only good because she's shown consulting the top specialists in the country, who most people will never have access to. Besides, anyone who can "walk 14 miles" before feeing pain is not representative of most people with EDS, and that's why this documentary is so damaging, as is the "you can do anything you want if you try" mantra. No, most of us can't. It's an absolutely infuriating vanity project, and should never have been made.

[@savyy4minnie]

@@lisadevlin4288 First of all, chill. The last thing anyone with EDS needs to be doing is fighting and insulting one another. Now, I didn't know you were talking about EDS UK bc you mentioned The Ehlers-Danlos Society. Sponsors give free things (like braces) to people who they are something in exchange for free advertising (i.e. the London marathon and a documentary.) I'm not sure where you're getting the part where she could walk 14miles with no pain. She also never says that any EDSer could do it. She actually says don't try it. The "you can do anything you try" and "do what they say you can't" mantras dont have to apply to a physical accomplishment. I am bed bound, 22, dealing with every dream I've every had being smashed in front of me and I hate those mantras. But that doesn't make them harmful. I know people like us that are only alive because of things like that. But most of all, and hear me clearly, I NEVER said that Great Britain/ the NHS/ Europe is perfect when it comes to EDS treatment. Because NO WHERE IS. It's an unclassified rare disease for a reason. You don't think I understand that what is shown here is the BEST you can get in a respected country? I would hope it would be. I pray that one day anyone with this horrific disease can get care like that, but I know that isn't possible. Also, as a patient in America where EDS is not considered a disability, and so we get no assistance from the government unless we can prove that it is imminently fatal, have been able to work but then became disabled, or have other major issues (not related to EDS) When we have to decide between going to the doctor or eating that week, when my mother and I almost lose our house due to medical debt, I REALLY do not appreciate having you throw the NHS in my face and then try and compare it. No, it probably isn't any better. But you at least don't have to deal with every doctor/nurse practitioner/pharmacy/hospital ECT. that you see not giving a shit whether you live, die, have a horrible reaction to a medication, they give you the wrong medication, whatever because all they see when they open that door is dollar signs and one thing I know about the NHS is that their pay is shit and anyone that doesn't wash out in med school (and stays at the NHS, don't come at me with the private doctors again.) is actually there because the actually want to help people. There is nothing wrong with one of us sharing our story. More of us need to but don't because we get hate from other EDSers who should be there cheering us on.

[@lisadevlin4288]

@@savyy4minnie I'm not quite sure why you're under the impression that I'm not allowed a different opinion to you. Chill yourself - I'm not the one writing thousand word essays on KZbin. How strange.

[@juliefarrell3957]

Fifty two years old...seeing the geneticist next month......sigh

[@lightwavz]

51 and just got my referrals this week. We needed this in the '70s, didn't we?! But at least we can fight for everyone younger! 💪👏🙏

[@clairelurquin]

48 and waiting for genetic results