Be sure to watch the second part of our interview with Jeannie Di Bon kzread.info/dash/bejne/hY6TzZlykdndc7Q.html

“If they can’t connect the issues, think connective tissue”. Thank you Bob and Brad for helping raise awareness for EDS.

@BobandBrad

2 жыл бұрын

You're very welcome

Thank you for hosting me. Really enjoyed talking with you.

@ajohnson3830

10 ай бұрын

I have EDS but can’t find any doctor that knows anything about it. I’m in AZ.

I have Stickler Syndrome, which is another connective tissue disorder similar to EDS. Please cover more of these conditions! I have never seen a physical therapist who understands these conditions, or even tries, so they always give me exercises that make me worse. Dysautonomia can be a complication of connective tissue disorders, which I also have, and it complicates things quite a bit.

@BobandBrad

2 жыл бұрын

I will add this to our to do list, thank you for the suggestion!

@funningames2243

2 жыл бұрын

@@BobandBrad Could you also add HSP also known as FSP. Hereditary Spastic Paraplegia, or Familial Spastic Paraplegia. Specifically how to diagnose it.

@janineypants

Жыл бұрын

Yes! I have hEDS and have POTS, which was exacerbated by Covid. I have to eat so much salt now.

@christinap-c

4 ай бұрын

Oh mine try. Even if they don’t really know. They are the best medical professionals I deal with.

It took me 40 yrs to get my diagnosis. I am looking forward to learning more and maybe be pain free one day!

I'm 62, and finally on the verge of getting diagnosed. My physical therapist is convinced.

I don’t have EDS, but I have Hypermobility Spectrum Disorder, which was referred to as Benign Hypermobility Syndrome when I was diagnosed. I’ve had joint pain growing up, but the other nasty symptoms didn’t show up until I reached my twenties. There’s nothing benign about Hypermobility! Do yourself a favor to visit a rheumatologist if you have symptoms. They know how to do evaluate you through a combination of Beighton Score and medical history. Do visit a good physical therapist if you suffer from repeated injuries due to loose joints. Resting alone won’t help the injuries go away! You need to work on building muscle tones.

@Truerealism747

11 ай бұрын

Mine I visited 2 didn't no diffarance between hsd and heds hypomobility all over fybromyalgia symptoms I e had hiatus hernia opp sinus surgeries migraines for which neurologist says I have migraine in body and stretch skin in places heal in keyloids how do we no hypomobility all over

@carlyar5281

8 ай бұрын

I agree the a good physiotherapist is vital! About resting, it is so important to build muscle tone and what’s called ‘resting muscle tone’ because that’s what holds our bodies together. When you have an acute injury, like a sprain or a dislocation, it’s important to relocate the joint and immobilize the joint. BUT keep the rest of your body, active because deconditioning is our worst enemy.

I'm one of the people who have been asking for this over the years, and I'm so glad to see it happen with such a reliable source like Jeannie!

@BobandBrad

2 жыл бұрын

Great to hear, thanks for watching

Grateful you folks covered this. I have a beautiful niece, who is adopted, finally get diagnosed by a geneticist. They told her until then it was all in her head.

If you have it get your aorta (major blood vessel leaving heart) checked out as it can result in aortic dissection (tearing blood vessel wall).

@BobandBrad

2 жыл бұрын

thanks!

YESSSS - EDS awareness! Thank you for this! I waited 30 years for a diagnosis! I went to SO, SO many specialists over the years, until a hospital rehab doctor suggested Ehlers - Danlos ! I did YEARS of physical therapy and multiple treatments before someone putting it together! ! EDS is SO under diagnosed! Jeannie is a super star; thank you for having her on !

@malinichandra6953

Жыл бұрын

I waited 20 years

Knowing you have EDS is such a relief. I was told the only thing you can do is use ibuprofen, and pain therapy. I have been more careful how I move, and what I lift. I really pay attention to my body.

@BobandBrad

2 жыл бұрын

glad to hear you are taking care of yourself

@DougKremer

2 жыл бұрын

When I told my Dr how much ibuprofen I’d been taking she suggested switching to meloxicam, one 15mg tablet per day instead of handfuls. It’s been a game changer for taking the edge off my daily grunts and groans. Mindful motion and attention to my posture has really changed my life so far also.

Finally! I've been waiting for a video on EDS for a long time. My daughters and I are in the process of being diagnosed with hEDS. I know that the more severe types are quite rare, but I don't believe that hEDS is rare at all, just rarely diagnosed. Very few doctors know enough about it(they say this themselves; this isn't me being disrespectful) to be confident in diagnosing it. In fact, most people who have hEDS(or any other type, really) know more about their condition than most doctors. And that is partly due to the fact that they get the brush off from so many doctors that they feel they have to figure out for themselves how to manage the condition and its many comorbidities.

I have hEDS and it's always so exciting to see it being recognized. Awareness is key, I can't wait to check out her books and share this with my fellow Zebras. Thank you! 🙂

@BobandBrad

2 жыл бұрын

You're very welcome

@heidibonjour

2 жыл бұрын

Jeannie also has lots of free videos on KZread! :) Good luck from a fellow Zebra!

@chitowngal9201

2 жыл бұрын

@@heidibonjour Good to know, thank you!! 😊

I have EDS. I was diagnosed at age 29, 10 years ago this past month, at the Mayo Clinic in Rochester, MN. I had been a previous patient to U of MN hospital Care and flew to Mayo on advice from a rheumatologist. It was my last hope. After flying there(from California) in December with my best friend around the Polar Vortex time many years ago... My goodness. The lengths our families and we went through to help me get that diagnosis and so I wouldn't have to fight all of the battles alone. Getting support, even someone who believes you who you can talk to about this pain and heart problems, and terribleness is really helpful. I've been in more pain recently but not feeling up to going to a physical therapist and I know my body. Ery well from many years of physical therapy for all of the ballet injuries-thats one sport that has many hyper mobile people!. Even the bones are affected, it's quite intense. I feel validated just seeing and hearing you also learn about this genetic condition us Zebras share! I'm so excited to watch these episodes! I've shared these on Facebook! Thanks for putting this out there, Jeannie and Bob & Brad!

Yes! It makes exercising a challenging! I have had so many injuries because my joints hyper-extend so much.

@nancywillis1188

2 жыл бұрын

I knew I was a bit different too but this makes so much sense. I could get into so many yoga postures without much training or practicing. But I anyways had trouble getting out of a posture because I could extend so far. I'm 75 now so am not as flexible now.

@BobandBrad

2 жыл бұрын

hopefully this helps

I do! I have hEDS and I'm extremely flexible everywhere. I have cervical instability, and also a lot of skin involvement, as well as gut involvement. I have POTS too, and allergy problems are getting worse. Mine got really bad after having babies. Thank you so much for Covering this 💗

@Truerealism747

Жыл бұрын

Stress flares the body check out TMS Dr schubiner

Thank you for bringing awareness of EDS. I wasn't diagnosed until my 40s. I also have osteoarthritis and fibromyalga

My doctor told me aside from genetic testing, there is no test for it. However, I have seen videos of people with hypermobility who improved by getting physical therapy to support the muscles near the affected joints.

Thank you for covering this issue that few people know about.

@BobandBrad

2 жыл бұрын

You're welcome!

I have hEDS and fibromyalgia, and I had 2nd stage Lyme Disease about ten years ago, so I have a lot of chronic pain and fatigue. I cannot thank you enough for spreading awareness about this ❤️ Living with an invisible illness is very hard, especially when people don’t take it seriously / don’t understand it. I CONSTANTLY sublux (mostly my shoulders and knees), even just by walking

@Truerealism747

Жыл бұрын

What were your symptoms of Lyme getting tested eds chronic pain

@aloradawn183

Жыл бұрын

@@Truerealism747 With Lyme, I got really sick (high fever, terrible fatigue, etc) about 2 weeks I think after I got bit by a tick. Went to the ER multiple times & they didn’t know what was wrong. I got football shaped rashes all over my body, & an infectious disease doctor finally diagnosed me. hEDS is genetic, & the test for that is fairly easy (as long as you have a doc that knows about EDS). Biggest symptom with that is super loose joints and skin

@malinichandra6953

Жыл бұрын

I totally hear you I’m in the same boat and suffering with that been to several doctors over the last 15 years and now finally got diagnosed this year

@Truerealism747

Жыл бұрын

@@malinichandra6953 ime awaiting diagnosis pain 25 years fybro in shoulders armpits heal s what are your symptoms

Yes!! Bob and Brad never disappoint thanks so much for this

Thanks to both of you for coming together -my two most favorite physiotherapists❤

@BobandBrad

Жыл бұрын

No problem!

I've been waiting on you guys to do some videos for us zebras! Thanks Bob and Brad!

@malinichandra6953

Жыл бұрын

Me too !!

I do have a Correction/Adjustment, for the American audience: More and more, Geneticists are refusing referrals that might be for Hypermobile EDS, because there are no associated genes to test for currently (this might change in a few months). They are instead referring back to primary care for evaluation via Beighton and Brighton. So it's worth trying with your general practitioner first.

@anaphylaxis2548

2 жыл бұрын

GP’s have no idea what to do with EDS.

@petrapedia

2 жыл бұрын

I'm sorry you've had that experience. I've had several who worked with me and allowed me to teach them as we went.

@anaphylaxis2548

2 жыл бұрын

@@petrapedia Wow, I’ve never found one who knew anything about it or who was willing to learn. 🤦🏻‍♀️ I’m so glad that you have though.

@BobandBrad

2 жыл бұрын

Thanks for your feedback!

@petrapedia

2 жыл бұрын

It helps that I go to a Residency/Teaching practice. The new doctors are more likely to have a baseline idea of what it is, and are generally more open to curious cases and learning from/with patients. I also suggest finding a DO over an MD. They have better awareness of the whole of our bodies, I find. And even more likely to know EDS from their focused education.

i have hyper mobility eds thanks for bringing awareness and sharing her story another great videp

I am 65 years old and I think it occurred to me that I have been frustrating as I was more flexible than other cheerleaders it dancers. I tried to do more, but now I have osteoarthritis, migraines, I have a few operations

Thank you Bob for this information from Jeannie Di Bon.

@BobandBrad

2 жыл бұрын

You're welcome, thank you for watching!

Thank you for spreading awareness of hEDS. I was diagnosed with hEDS last year after over 30 years of symptoms. Doctors need to become aware of this condition as I used to be a biomedical scientist and struggled to get diagnosed even though my identical twin sister was diagnosed before me! The doctors refused to believe she was diagnosed so I printed our her diagnoses letters (she had received an hEDS diagnosis from two doctors - Dr. Matthias and Professor Rodney Grahame) and took them to the hypermobility clinic in London where I was diagnosed by Dr. Mittal. It was such a relief to finally understand what was happening and why I have so much chronic pain. It was also so very validating. Doctors need to learn to have more empathy and compassion and need to learn about the ehlers danlos syndromes. Thanks again for spreading awareness! Xxx

Been waiting for this. Thank you. :)

Thank you so much for this interview.

Thank you for bringing awareness to EDS. I have the hyper mobile type. Diagnosed in my 20’s. A few relatives on one side Of my family were also diagnosed and we look back at ancestry pictures and wonder.

I am thankful for these videos. I am going to try to show these to my friends bcz it’s taken me until I am 50 to get my diagnosis and 8 active years in the actual process of getting all Drs on board and all wheels in motion referrals etc. I’ve spent 2/3 my life under heavy medical care, so many diagnoses were given to me and I kept feeling there’s something else, something more… even after the 3 1/2 years struggle and Drs telling me I had Fibromyalgia… still I knew there was something more. 8 years later, perfect score on Beighton score, Geneticist tells me I am the strongest EDS he's seen hearing my history and seeing my presentation. I have every organ system with problems, and I don’t move without pain at all. My quality of life has spiraled. I feel like a failed human. And most people think I look fine.

You can be born with a connective tissue disorder and be symptom free until you get Lyme and or co infections which invade connective tissue. Also look into RCCX theory.

@Truerealism747

Жыл бұрын

What's best test for Lyme

@Truerealism747

Жыл бұрын

Sure this is me

Thank you so much for having someone come on to discuss EDS! Not enough people are knowledgable about it and is said to be very underdiagnosed. I got diagnosed w/hEDS in 2020 and prior to that, physical therapists and other doctors all thought I was just being dramatic or a big baby. Having my first knee surgery finally in August for bilateral running injuries I developed in 2018 and never went away no matter what - apparently my patella is subluxating in and out of place and can't be fixed with PT, injections, medications etc (I tried so hard for so many years and hope this will help resolve things). One thing to mention, is that EDS commonly causes POTS and exercise is very important for people with that. Since I injured my knees I basically couldn't do any cardio anymore and cardio really is what you need to help POTS. It's a struggle, but wanted to mention this just in case it is useful.

Thanku Jeannie di bon for being there for us zebras - we would be lost without you

@BobandBrad

Жыл бұрын

Glad we could help!

Thank you so much for this video. The more folks know about this the better 👍

I'm 53 and just was diagnosed with EDS this week. Amazing it takes so long , and it's years of searching fir why I was in pain.

Hello Madame, very good to say that not every Eds Patient is the same and Eds is more than the flexebility of joins. You are explaining it very well. Thank you very much

Wow thanks for this show!!!

@BobandBrad

2 жыл бұрын

glad you liked it!

I was recently diagnosed with Hereditary Alpha Tryptasemia (which apparently is present in 6% of Caucasians). One common comorbidity is Ehlers-Danlos…..thanks for providing an expert on the condition.

@GLGC688

2 жыл бұрын

Hi! I also have HaTS. So much info is coming out daily about our condition!

Thanks for the helpful video. I've been hyper mobile my whole life. I have arthritis in all my joints.

Nice to have Jeannie on and hear her background. Was diagnosed with hyper mobility but think it's definitely hEds

Aw yay! I have hEDS and I'm subscribed to both B&B and Jeannie's channels! Cool collab!

I've always been hyperflexible.. used to be referred to as double jointed obviously no such thing. I'm 58 and up until 6 months ago I could easily scratch the whole of my own back or apply my own back suncream. But now my arms are extremely stiff and painful (possibly polymyaglia rheumatica .. have you got videos about this) I have chronic pain, m.e, FM IBS endocrine disorders. I have very soft skin and until recently looked younger than my years. Sleeping with 20 strategically placed pillows is my norm to reduce pain in my joints. I may push to see a specialist as pain is currently off of the scale. I'm in UK, where getting a diagnosis or being heard by medical people seems difficult ( understatement). so I avoid the battle. I haven't got the energy to waste. I will watch more of Jeanie's work. Thanku she was excellent 😊 .

It took 49 years to diagnose me, my daughter was diagnosed at 13 as she was suffering and we knew something was very wrong

Yep, I do have hEDS. Diagnosed at 46 years old.

@BobandBrad

2 жыл бұрын

thanks for sharing

Just got diagnosed with fibromyalgia after years of searching. It relly hasnt sat well with me and then i found out about EDS. Ive always been super flexible without being athletic, at all. Heavy periods, migraines, vascular issues, failing eyesighy, ect. Im taking this info to my upcoming dr apt

I have been diagnosed with hypermobility syndrome disorder but not EDS, which I find odd as I have many of the hallmarks of EDS such as varicose veins, myopia, keloid scarring, hernias etc.

@BobandBrad

2 жыл бұрын

I have added this to our to do list :)

@DougKremer

2 жыл бұрын

It’s a spectrum for sure. I don’t think there is a clear line.

@jenny2tone242

2 жыл бұрын

@@BobandBrad thanks

@suzichoclatcrafts

2 жыл бұрын

@@BobandBrad Jeannie is awesome and gives so much time to us Zebras. She is equally qualified to talk about Hypermobility Spectrum Disorder (HSD) as in layman’s terms it is very, very similar to hEDS, in fact because of the overlapping nature between the two conditions it is said to be almost indistinguishable and most if not all EDS organisations now quote hEDS/HSD because of that. Those diagnosed with HSD can be anywhere along the spectrum. I believe the name of HSD is being looked at again as it makes things far too confusing for everyone to understand the differences with hEDS. I have been diagnosed with HSD but always quote hEDS when talking to medical people as hardly anyone has heard of HSD x

Great vid! It took me 45 years to get a diagnosis. 😮We will file that under ‘better late than never!’

My HEDS was at it's worst during my pregnancies. I had sooooooo much widespread pain, headaches and my shoulders dislocating daily (whereas in my youth it was on ocassion), jaw dislocating, teeth were loose, neck and back going out of line, premature labor, pubic bone split during delivery, and sacro-ilieac joint dislocated. NONE of my doctors picked up on it. Fast forward 20 years, and I'm now in my late 50s and my orthopedic says, "Do you frequently dislocate your shoulders? This is the 3rd time this has happened since you have been here." I said, "My whole life this has happened. It wakes me up from a sound sleep." She ran the HEDS test on me and said she thought I had Ehler's Danlos. The Physical Therapist I was sent to agreed. I'm not bothering with the genetic testing until there's a marker for Hypermobile. I've also been diagnosed with Lymes Disease, Fibromyalgia, Epstein Barr, Lymes and Psoriatic Arthritis. I wonder if those diagnosises were inaccurate.

Hi Bob and Brad 💖💖

@BobandBrad

2 жыл бұрын

Hi!

I was another person who wasn't diagnosed until I was almost 35. By that point I'd already caused irreparable damage to my knees and shoulders, and my nervous system massively over-reacts to pain stimuli after having been in constant pain for the last 30 years. Of all people, the guy who finally figured it out was the neurologist my PCP sent me to to make sure my migraines weren't being caused by a tumor.

@Truerealism747

11 ай бұрын

What is the damage the joints have sustained ime.same with pain central sentization b

@bethg7026

11 ай бұрын

@tomsale5142 what i know of: I've had two knee surgeries (plica removal and torn meniscus removal) because of hyperextension damage. I've subluxed joints so many times that I've built up damage from microtears creating scar tissue. I have arthritis everywhere, a herniated cervical disc, and a 1cm hole worn through the cartilage between my kneecap and femur. There seems to be no way to cure my shoulder impingements or the lack of space between my bones in my knees, hips and shoulders, so everything rubs and grinds. I had bone spurs at the base of two toes that damaged the flexor tendons and now can't bend those toes. The spurs formed because I was hyperextending that joint every time I took a step. Oh, and at the ripe old age of 35, I had osteopenia. 9 years later I'm sure that's moved up to osteoporosis.

@Truerealism747

11 ай бұрын

@@bethg7026 my constant symptoms are shoulders awaiting MRI long time fir my knee sublex do you have Asperger's to if you do check out TMS there's people getting relief with the mind body approach but hasn't worked for me yet depends if you have anxiety etc with it

@Truerealism747

11 ай бұрын

@@bethg7026 ime around same age to

@bethg7026

9 ай бұрын

@tomsale5142 I am not on the spectrum. I handle my pain very well, but had I been diagnosed earlier I wouldn't be in nearly as much pain as I am now.

Wow! This is one syndrome I'm not familiar with. Sounds so similar to my experience with what I went through before being diagnosed with fibromyalgia and chronic fatigue syndrome! Would love to know the difference! Will check out her links! I was diagnosed with fibromyalgia/chronic fatigue syndrome in 1995, but still struggling with pain and fatigue! Have had a lumbar fusion and 3 cervical fusions! I'm going to research this! Thanks Bob and Brad for all you are helping me with!! I appreciate y'all!

@GLGC688

2 жыл бұрын

Fibromyalgia and ME/CFS are both comorbid with EDS so it can be possible to have all of the conditions. With EDS, you can look up the 2017 criteria for diagnosis for a start to check if you have it. Dysautonomia and Mast Cell Activation syndrome are also commonly comorbid with EDS.

@bettyjohnson2964

2 жыл бұрын

@@GLGC688 thanks so much for your help! This video was the first time I had ever heard of this! I really appreciate your help!!

@Truerealism747

Жыл бұрын

@@GLGC688 sounds like me for decades awaiting referral for it but late at 42

Yes I do have EDS. ❤ Stay strong mis amigos ❤

I started to get pain in my neck and jaw at age 22 with fatigue and pain. Over the years it spread. I dislocated my knee just walking across the floor. The pain and fatigue are always there.

Yes

You always try to do something new and extra ordinary and make ur audience feel excited for every next video. I took some inspiration from you especially in my video where I became MrBeast for 24 hours! 😂💕

@BobandBrad

2 жыл бұрын

That's so nice to hear, thank you :)

@SCRT

2 жыл бұрын

@@BobandBrad :)

I’ve seen countless doctors over the last 40 yrs. 8 ortho surgeries, a variety of meds and treated like a nuisance. None could give me a diagnosis. By chance I requested my Army medical discharge papers and they kicked me out for HEDS.

Hopefully all UK pharmaceutical companies, NHS work together to find cure for all ehlers-danlos syndrome problems.

PLEASE READ THIS. First I am not a Dr.... but here's my story... my neighbor across the street from me has a daughter... when I saw her outside sitting in a chair, she looked like a sparrow... 85 lbs. Later that day I asked her father what was going on with her. He said she has EDS .... a disease that has attacked her collagen in her body... I told him about pycnogenol , a supplement made from pine bark extract... after his son's investigation ... he said the whole family should take it... The daughter took 100 muscle daily and within 1 month gained weight and her one remaining kidney started functioning again without dialysis... she recovered from EDS. The only contraindication is if you are taking blood thinners .... hope this helps someone...peace .

I had surgery on my ankles, they put in artificial ligaments so I can walk normally. As a kid I had to use “corrective” shoes, and had sprained ankles a lot.

@BobandBrad

2 жыл бұрын

Very sorry to hear that

@Junzar56

2 жыл бұрын

@@BobandBrad it’s been great! I can walk now!

@heidibonjour

2 жыл бұрын

Hi Jeannie, do you also have EDS? I have hEDS and one ankle that will NOT heal from repeated sprains. What type of ankle surgery did you have ? I am considering a tendon harvested from my thigh wrapped around my ankle to tighten it so I could walk again. ( Maybe I need an artificial tendon surgery too! ) thank you

@Hansen23900

2 жыл бұрын

I wonder if DMSO would tighten up ligaments and tendons. Makes you smell like garlic though.

@Junzar56

2 жыл бұрын

@@Hansen23900 I doubt it, it would be interesting to look into, but EDS means you will always have collagen issues, very elastic ligaments. Iui

I’ve been clinically diagnosed with EDS.

Prolotherapy? Strengthening the joints apparently helps immensely with all symptoms associated with those nerves and connecting organs

Also can have EDS without hypermobility. Me but having trouble getting in Cleveland clinic for evaluation. Now have 2 shoulders and knee need replacement so w. Does Vit C help to increase collagen formation?

@GLGC688

2 жыл бұрын

It doesn't. Even if our collagen formation was increased, it would still be faulty collagen because the mutations cause the collagen to not work properly or not be properly made (there's several areas of research looking into the different mechanisms on this right now). So unfortunately supplements won't work because our body will just turn them into our non functioning collagen.

@darilekron4590

9 ай бұрын

I take L-glutamine after workouts and it helps build muscle (I've been strengthening the muscle groups around shoulder due to years of instability in shoulders) hydromassage at gym also helps lessen back, shoulder and neck pain.

I'm Bob and Brads favorite Marfan! In my opinion of course! 😆

Perhaps this is worth repeating: All EDS' have genetic marker. Only hEDS does not currently. Russell “Chip” Norris, Ph.D., a professor in the Department of Regenerative Medicine and Cell Biology, and his team believe they have identified a gene mutation associated with hEDS. That's at the Norris Lab on the campus of the Medical University of South Carolina. I would link the article but KZread does not allow it. Do a search for "MUSC researchers announce gene mutation discovery associated with EDS".

@darilekron4590

9 ай бұрын

The Norris Lab at MUSC found a gene that was present in about 20 percent of the participants in their hEDS study and hope to find other genes underlying hEDS. The Norris Lab findings is being peer reviewed before announcing the gene variant that they discovered in 20% of their hEDS study participants. Also HATS (hereditary alpha tryptasemia syndrome) causes elevated tryptase levels which can cause hypermobile joints. Tryptase acts like a meat tenderizer according to Dr Theoharides whom is a well known mast cell specialist.

wow! never been this early before

@BobandBrad

2 жыл бұрын

:) thanks for being here

53 jears before diagnosed

Just found out I have this, my life is OVER.....

@tulafitzgerald5649

6 ай бұрын

no no no, my dear. This is a chance for a New life.

I was confirmed to. Have this.

0:27 *Eelers Daniels Synrdome*

I have Hypermobility

What is that

@BobandBrad

2 жыл бұрын

what?

@valerieescabi6104

2 жыл бұрын

@@BobandBrad I didn’t understand what it was

@valerieescabi6104

2 жыл бұрын

Ehlers Danilo’s Syndrome

I have selective hearing syndrome. My ex's can confirm.

@BobandBrad

2 жыл бұрын

A lot of us suffer from that :)

All thanks to Dr Aba for curing from EDS Am forever grateful….

Yep. Sure do. Eat meat, avoid allopathic medicines and exercise plenty and get regular body work.

I am only one that will be first 💪

@BobandBrad

2 жыл бұрын

LOL

@DougKremer

2 жыл бұрын

Winner!

Her website has no information about EDS or for those without a diagnosis whatsoever, she’s just selling her stuff, sadly. I was hopeful.

@joyfulone1816

2 жыл бұрын

That's what i found.

@tanisgentle3576

2 жыл бұрын

@@joyfulone1816 disappointing

Lord, don't give any living being such defects that are passed on from generation to generation 😰😰

I am glad to see EDS info getting out, but was very disappointed in this video. Please at least learn how to pronounce Ehlers-Danlos Syndrome before presenting on it. Learning some basics about the disorder would be helpful, too. This was so elementary as to be useless, which was a shame as I expect (and normally see) more from this channel. We zebras can spend lifetimes getting properly diagnosed, and this video gave little info that was useful toward that end, much less ways to effectively manage the condition itself (which was my hope). I've learned a lot from this channel that has been helpful - this was definitely not one of those times.

@BobandBrad

2 жыл бұрын

sorry to hear that and thank you for your feedback

@joyfulone1816

2 жыл бұрын

Check.

@suzichoclatcrafts

2 жыл бұрын

Tamara please checkout Jeannie's KZread channel Jeannie Di Bon , she has videos on how to manage all body parts with gentle exercise and podcasts with others discussing the co-morbidities too, all for free. Jeannie also has a Zebra Club Facebook group and app. Maybe Bob & Brad will get Jeannie back to do a 'How to Manage EDS' chat soon ? x

@GLGC688

2 жыл бұрын

This was incredibly rude. They are trying to learn and they have an expert on to explain the things you questioned about. The fact that they are open to and are trying to learn about EDS is *much* more than what we get from many medical professionals.

@joyfulone1816

2 жыл бұрын

@@GLGC688 i was expecting that they/he would have taken the time to get more informed personally before the show. Making that observation and having expectations is hardly rude. It was a surprise to listen to him mispronouncing the syndrome, more of a surprise that she didn't politely respond by pronouncing it correctly for all of us who may have, as him, not known the way to say the names of the people it was named after. Proper is proper and that's important for many people. But thanks for policing people's opinions here in comments and i hope it enriches your moment.