My Bend or Break Ehlers-Danlos Syndrome Tedx Talk
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- Опубліковано 16 тра 2024
- This is a video of my Tedx Talk speech about the story of my disability with Ehlers-Danlos Syndrome. At the live York University event where I originalyl gave the Tedx Talk I met two film directors who wanted to make a documentary about my story which has now been released! You can watch for free here: • Bend or Break | EDS Do...
If you want to connect with me or join any of my numerous invisible/chronic illness advocacy projects, here are a bunch of helpful links!
If you want to connect with me or join any of my numerous invisible/chronic illness/EDS advocacy projects, here are a bunch of helpful links!
1. The Bend or Break medical blog group where people can read my memoir that the documentary was based on (film covers events up to 2018, recent blog posts continue the story): / 16329. .
2. Direct link to my blog/memoir for if you don't have Facebook: breakorbend.blogspot.com/
3. My Bend or Break EDS/medical Instagram page: / _bend_or_br. .
4.My personal Instagram page for non-EDS-related fun: / mitchmartow
5. My game streaming twitch channel catered to those with chronic illness, but all are welcome to hang out and have fun: / druidzebra
6. My discord server for gamers with chronic illness/zebras (we play all kinds of games together!) / discord
7. My Facebook group for those who want to be notified when I goes live on twitch: / 44602. .
8. My UA-cam Account:
www.youtube.com/watch?v=OMCPf...
9. EDS Canada page: You do not need to be Canadian to follow / edscanada
10. EDS Canada support group where I am a moderator; you need to be a Canadian with EDS to join / 11573. .
11: An International Support Group for men with EDS where I am an admin:
/ 1439334896366752
#eds #ehlersdanlossyndrome #documentary #documentary2022 #heds #ehlersdanlossyndromehypermobility #tedx #tedxtalk #Bendorbreak #speech #chronicillness #invisibleillness #presentation #disability @ @Voyager Studios #disabilitiesawareness #invisibledisability #chronicpain #chronicillness
If you want to connect with me or join any of my numerous invisible/chronic illness/EDS advocacy projects, here are a bunch of 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/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: instagram.com/_bend_or_br...
4. Mitch's personal Instagram page for non-EDS-related fun: 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/khyaYHN3
7. Mitch's Facebook group for those who want to be notified when he goes live on twitch: facebook.com/groups/44602...
8. Mitch's brand new TikTok account with content on the way!
www.tiktok.com/@mitchmartow
9. Mitch's UA-cam Account:
www.youtube.com/watch?v=OMCPf...
10. EDS Canada page: You do not need to be Canadian to follow facebook.com/edscanada
11. EDS Canada support group where Mitch is a moderator; you need to be a Canadian with EDS to join facebook.com/groups/11573...
I have cEDS, or Classical EDS. I have been dealing with POTS and I am going to be wearing a cCollar on my neck soon as my Neck has caused me lots of pain and I get off balance. I have to walk with a Rollator walker or a walking stick to help keep me from falling.
7:41 This part got me. I’ve gone through these thoughts so many times, because I assumed I was the same as everyone else… or that it was just in my head. ❤ The validation from late diagnosis has helped me incredibly, because I can now give myself grace instead of thinking I’m being “lazy”. It’s still difficult for others to accept what I’m going through, because they can’t see it.
I spent almost every night for 4 decades trying to convince myself that I had made this pain up in my head for attention somehow. Telling myself it wasn’t real. I felt crazy and was treated accordingly. Thank you for sharing your story.
Same! I was finally diagnosed and everything makes sense now but I feel angry that I was dismissed and told I was crazy, I really started to think I was crazy and almost checked myself into a phsych ward
What a brave, wonderful person you are.
Wow! You are so brave! My experience is so similar except I just got my diagnosis of HEDS this year. I’m 50 and have been treated by everyone in my life and every doctor I’ve seen, as a hypochondriac with anxiety. ❤️
Thanks for sharing, Mitch. I wish this video were required continuing education for all medical providers…No one expects every provider to know every illness, but we should be able to expect being treated with respect and compassion.
I'm 84. As a toddler in the early 1940s, my ankles had to be wrapped so I could learn how to walk. I could never ice or roller skate because of my weak ankles. As a grade schooler I developed gastro problems with many humiliating accidents. This later became IBS. Developed allergies and asthma around age 10. Both knees dislocated when I was 15 followed by many surgeries (mid 1950s). Rt. patella never repositioned. (had total rt. knee in 2000). Have scoliosis, neck, shoulder and lower back problems. I have lived and still with constant pain because of all these joint problems. Carpal tunnel and neuropathy, especially in fingers. Open heart surgery at age 76. Many extended family members with similar symptomology. Several recent skin cancers. I've lived with connective tissue disease my whole life without ever connecting all these conditions as a syndrome, a connective tissue (collagen) disease.
My story is so similar to yours. I became my own advocate. Late diagnosed at age forty two it has been eye opening and there has been a lot of reversal of damaging type thinking. So spreading awareness is my goal tso that others can catch this early and manage it properly. A lot of us others suffer from so many comorbidites.. Shortly after I was diagnosed with psoriatic arthritis and Anklyosing Spondylitis. I later learned the commonality of autism and ehlers danlos syndrome and was later diagnosed with autism spectrum level one.. so the last 4 years had been a ride! I struggle mentally and physically many good days some bad days.. Those some bad days feel like a lot. The full body pain is endless and the struggle is hour by hour day by day
I have Hypermobile Spectrum Disorder (a sister condition to EDS hypermobile). There are many comorbities that ppl with EDS and HSD have in common...researchers do not yet know why. Tons of videos to educate yourself and your doctors. Also I was having pain in my legs and my dr was going to chalk it up typical hypermobile chronic pain...instead my primary care physician tested me for venous insufficiency. I was positive for insufficiency. I have to see a vascular dr to see what can be done. I'm really surprised that my dr who is supposed to be versed in EDS was just going to say the pain came along with the hypermobility....like a cop out. I have since learned that everyone with connective tissue defects are at high risk for getting venous insufficiency. (The veins are what bring the blood back up to the heart and brain from the extremities (arms, legs). So the valves aren't allowing the blood to go back up in the leg. I have no typical warning signs, dont fit the criteria except that I can barely walk after just 10 minutes of activity. Look up symptoms and see if anything fits. If you have painful legs as they describe in symptoms, perhaps it's venous insufficiency. I have not seen any EDS video about this topic...though if you look up connectives tissue disorders, they'll list some of the issues that folks are high risk for...such as the venous insufiency.
Also EDS Society has a registry database of everyone diagnosed with EDS any time and HSD. They are using it for research purposes...I was actually contacted...they are attempting to look for the genes associated with hEDS and HSD which are the two which have no identified genes. I would encourage everyone with diagnosis or think you have it to register. Maybe we can get the disease off the "rare list"....since it is not rare...it rarely diagnosed!
My hEDS was discovered after I failed to recover from the shingles virus. I can sympathize with this young man. 😢
Trying to get attention from doctors is can be so demoralizing.
Same. Shingles triggered things off for me. High vit d and c everyday to stop that taking over my face. 15 years later it still tries to come back as I get run down from pain. Phew. Tough old life. X
@@sillysop I can't even imagine getting Shingles on the face, it's too horrible!! You're incredibly strong!
Self care is definitely a top priority. It's funny that I've had to learn that it's ok to say no to others and put my own needs first. It's hard to admit having disabilities too. I have a great therapist and understanding doctors now. I hope you are managing well. 💜
Thank you so much for promoting awareness and for your advocacy for this community
Thank you Mitch! The struggle is real. ❤😢
My cEDS journey started after I told my Neurologist about my family’s history with Osteogenesis Imperfecta. Because cEDS shares the same genetic mutation with O. I.
Thank you Mitch, you are a saint and have done so much for so many people. I have a good idea that things are still bad for you because our stories are almost identical, and i know things are not great for me either. You however got up off of your couch to help yourself and maybe more importantly the rest of us and future people who have not even been born yet. You DID something about it, and so have my everlasting respect and gratitude.
I feel pretty confident in saying:
Thank you from all of the the Zebra's
Thank you! You're right that things are still rough, I've had several autoimmune disease diagnoses since we filmed the documentary about EDS in 2018. One of those diseases caused a major venous stroke at age 27 last year, and that means endless immunosuppressants and blood thinners, and the brain damage worsened my very rare non-24 hour sleep-wake disorder. I generally can't be near people indoors safely meaning very isolated winters, and all this together is greatly interfering with the invisible illness advocacy projects I still want to do. That includes a Bend or Break film sequel, once I can stabilize things again!
I get you man, I was "blessed" with multiple flavors of epilepsy as a "bonus" and experience some of what speak about there. The end result is I sometimes feel like I am in a special type of solitary confinement because i am alone so much of the time, and that is scary for someone that might fall down and twitch like a fish out of water with no warning at all. Sometimes, i honestly don't know if it's the pain and dysfunction or the isolation and loneliness that is worse. Maybe worse is the horrid side effects and lack of sleep we get from our condition and the meds that treat it, but I to generally can't just be around normal people and that's not even touching on the immunosuppressant issue which i also have. I know we don't know each other and the net is full of people with bad intentions, but i am not one of those, if you ever need anyone to talk to, I am here for you man. Contact me anytime for anything and i'll do my best to either help or just be there for/with you.@@mitchellmartow
THANK YOU! Good luck to us all! I'm getting ready to see yet another new doctor in 2 weeks & I'm already playing out how upsetting it will be to try to explain what's been going on with me -- and getting worse -- for decades; with the past 8 years putting me outside of hopeful. I will watch your presentation several more times between today and my appointment. Hopefully this will help to bolster my confidence and the (likely) inevitable shrug of disinterest/disbelief from yet another doctor. You are awesome!
Wait. What?? So your documentary and now here is where I am first learning that the chronic pain part of EDS can be latent until it’s triggered. With me it wasn’t until menopause although I’ve had chronic pain my whole life. Now it is very limiting! Thank you for sharing your story. I am also a MOT from Toronto although I live in Ottawa now.
Yeah! And literally just this week I became friends with a zebra who's pain also started when they contracted Swine flu in 2009 pandemic as a teenager! I remember doctors were saying at the time that swine flu unusually hit teens hardest rather than regular flu which is worst for very young and elderly. Thanks for taking the time to watch Documentary, Tedx Talk, and the skit! If you liked those things you'd definitely like my blog/memoir that the documentary was based off of (my old posts) but I've written plenty more since 2018 when filming started so blog continues the story! If you're on Facebook you can join blog group here: facebook.com/groups/163290407054413
If you don't use Facebook you can still read the blog. You don't need a blogger website account to read posts but you would need to make a free account to follow me to get notified when new posts are released. This links directly to my most recent and you can see all posts I've written since 2011 on the right side of that page!
Yeah I didn't start having pain until I got covid, doctors say that viruses can trigger and cause you to start having more issues than previously. I went my whole life until I was 40, just being super flexible, I did have back surgery at age of 36 because instability, my daughter is 21 and was diagnosed with eds, that's how I figured out I have it, she didn't have pain until she got covid.
Thank you so much for this video. Invisible disabilities are tough but your hard work helps us all. ❤️
Thanks so much for saying so! Glad you liked the speech ❤
Thank you for sharing from the mother of a teenage zebra.
Thank You for Hope 🦓
Thank you for your comment and taking the time to watch my story
I have this condition and came across his documentary, I related because he sounds like my son’s path. We had chiari malformations that led to a diagnosis of one of the rare types. He explains this so well, I’m glad he is doing well, or as well as any of us can be, now. The pain associated with this condition is unrelenting and hard to deal with.
Incredibly well done. Thank you. Great advice for some of us also.
I’m so thankful that I was diagnosed with HEDS in 2011, only two years after my onset that was coincidentally also triggered by H1N1, which is why I’m so drawn to your story. They still diagnosed adults at CHEO back then. It seems so difficult to get a diagnosis these days. We need so much more help with treatment options and we need much more compassion from medical professionals
Thanks for sharing! Swine flu indeed seems unique in how unpredictable it’s effects can be compared to more regular flu. And I definitely agree it’s gotten harder, the chronically Ill need extra help in a pandemic but the flood of the healthcare system makes the opposite occur. Waitlists were already unacceptable, but now The EDS clinic I talked about has a 4 year waitlist!
I developed Addison’s after H1N1. That was a tough year. I didn’t find out about EDS until I was 47. I still feel like doctors roll their eyes about my pain. They only treat me with antidepressants.
That is a brutal condition. I hope you've found some measure of satisfaction in being an advocate.
It is brutal. The comorbidities all add up to low quality life.
Brutal is the very accurate word I use - not lightly at all. Nothing but compassion for my fellow bendies. Xxx
~Hugs~
This makes EDS sound like it is an autoimmun condition. It is genetic.
EDS is associated with several autoimmune diseases, diseases which I unfortunately also have. (Relapsing Polychondritis which is then linked to Neuro-behcet's Disease and since EDS is linked with Mast Cell disease, my chronic urticaria is adjacent to that). On top of that, countless EDS patients who I've spoken to have had similar experiences where their EDS symptoms grew far worse after a major viral illness. Lastly, there are autoimmune diseases that are genetic in nature... it's not mutually exclusive. But yes, EDS itself is not an autoimmune disease and I didn't claim it was.
Thankyou this is insanely similar to my experience with vascular eds I was diagnosed not long after I gave birth to my son unfortunately he was born with hypermobile joints and was diagnosed at 2 I've been feeling down and had a crap day with pain and feeling so tired I want to cry knowing and hearing someone articulate there experience with eds so well is oddly comforting 🤍 and thankyou for giving some genuinely useful tips as I haven't found any yet ✌️
Thank you too! My speech gave you a boost and your comment gave me a boost back :)