"Canaries in the mine shaft." That's exactly what I've been saying for the past 30 years trying to find out what's wrong with me, and now my children. I always felt that we were the early warning system for the whole population.
45 mints to say: you can NOT directly help EDS by supplementation, BUT you should eat as well as possibly because diet and over all health are related, and you should be as healthy as possible so you can deal with EDS as best as possible. 45 fraking , mints.
That was a great presentation and as a 57yrd eds'er diet and nutrition is very important in self management and regulation of knowing which foods affect your inner structure. Trial and error project for me and it's been a long hard road for me. I started by listening to my body after eating certain food, if it was "screaming at me" within 12 hours sometimes less then I knew to omit it from my diet for 12 days and take note of how I felt on that date, keeping a diary is incredibly helpful in kick starting the process into action because being proactive is the key to opening the door to your own success as can be self management program, good luck in your new descoveries and God bless 😊
I have EDS. I used to have joint pains, stretchy skin and dizziness if I stood for a long period but I got into training a lot and pretty beefed up now. It has helped with my joints. Since I have low body fat now, the skin is not a big issue. The dizziness happens very rarely now.
I only found out today i have EDS. Im 49 years old, a lifetime of chronic pain and misdiagnosis. This is the first video ive watched and im extremely impressed with the information. I will keep digging
Her updated talk on Nutrition, Diet & Supplements is here (2023) and has the slides visible! ruclips.net/video/RpYmDvWp9KU/видео.htmlsi=7XMhJmqaS8XarE8B
The only thing I've found that works is a strict carnivore diet. Meat, butter, eggs, salt. Some limited hard cheese. That's it and I feel better eating ruminants like beef & lamb. It makes no sense other than being extremely anti-inflammatory. Also my pain is inversely proportional to my blood ketone levels.... Again, anti-inflammatory. It sucks but it works.
Same. Recent isotopic analysis of early human bones has proven that modern humans evolved to be highly carnivorous in the 80 to 100% meat eating range. This plant based eating bias is exactly what is making many people sick. Drop all sugars and grains and starches. Meat.and a little bit of fruit has worked wonders for many people. The most nutrient dense and easily digestible food for a human. I would get sick as hell following this plant based eating advice.
I foolishly believed all the BS about vegan/vegetarian being the healthiest way to eat for 25 years. After spending the last 10 years being nearly bedbound I was finally diagnosed with EDS and found people such as ribeyracel and Dr. Dawn Leighton. Their info helped convince me to go full carnivore. Even though my BMI was under 17 (chronic diarrhea etc) I have managed to gain some healthy weight and all my other problematic EDS symptoms have been drastically reduced. Carnivore has saved my life - all the MD's I've seen were worse than USELESS.
"When I think of I have four kids. They're going to have kids. Whatever I did before I had them is now potentially passed onto them. It really matters. I'm becoming more and more passionate about it. Sorry to go over on that one." Dr Heidi Collins
Well, having EDS and taking collagen with vitamin D, glucosamin and chodroitin has helped both me a lot. My hands particularly were getting stiff, I could not sew or draw, and there was a lot of pain, and the supplements took the stiffness and the pain away after half a year. Everyone is different so that does not work for everyone. I was very sceptical about supplements, but I tried and noticed the difference. There may be some deficiencies that contribute to the symptoms.
I wish there were more studies on taking collagen supplements for EDS because it's the only change I made (just to try) and in 6 months I could already see small improvements in my skin and huge improvements in my hair. It's too early for me to notice any real changes or improvements in my joints but it could be possible. We'll never know if this isn't thoroughly studied for an extended period of time on a big enough group. Great info btw 💙
This is very frustrating for me. I was diagnosed with hEDS and POTS this year and all four of my kids are also affected with both conditions, but they are so picky. They have food aversions and sensory issues and I don't even know where to begin to get our diet on track. I eat a wide variety of foods, but my kids will not. And trying the whole "they'll eat when they're hungry" thing doesn't work, because they will not eat. I wish I could speak to this doctor and ask her for help.
They are autistic, honey. Adhd, autism, pots and eds go hand in hand. It's not just picky eating. So either you are autistic or your spouse is. Knowing makes all the difference in the world to getting proper treatment.
@@kdelka81 you're right. I learned all that this year. I'm autistic and my husband likely also is. Also no longer able to eat that "wide variety" of foods myself due to mast cell disease.
I had fussy kids .. now teens . Low zinc affects sensory sensitivity. Increase zinc supplements..!! Test zinc & copper ratio. Give the kids unflavoured “fortibone or verisol or body balance “ collagen powder can be hidden in drinks and great protein have a few tablespoons
Her updated talk on Nutrition, Diet & Supplements is here (2023) and has the slides visible! ruclips.net/video/RpYmDvWp9KU/видео.htmlsi=7XMhJmqaS8XarE8B
From the video description: "A PDF of the presentation slides is available at www.ehlers-danlos.com/2017-eds-global-conference/. A transcript is available through bit.ly/2nMe2b4"
I don’t find this very helpful. I already know what to eat to be beneficial to my health. I stopped eating the standard American diet decades ago. The problem is my digestion is so weak and poor that I can’t eat it.
Why we see more of the face & courtain and very small picture about the data? Those who made this video had a low logic level to keep the important information hidden in a very small added pocket on the left side lol. Obviously no one cares about seeing a face or waste the screen with courtain. It should be totaly the opposite. That was annoying af while the information she says was detailed & helpful.
Start @ about 24:50 for the answer to the question on EDS. The info prior is nutrition basics - skippable if you have a decent background.
Thank you!
Wish I had seen this before minute 25. Lol.
Thanks!
To go RIGHT to the question about collagen supplementation: 25:45
wish the slides were visible. don't necessarily need to see the speaker. Could not see the slideshow at all. Excellent information.
A PDF of the presentation slides is available from a link for her presentation on www.ehlers-danlos.com/2017-eds-global-conference/
The Ehlers-Danlos
Now I can close my eyes and just listen and not worry about missing the slides. Thanks!
the page no linnet exists, is there another way to find these slides? thank you!
@@TheEhlersDanlosSociety As the other responder says, the link no longer works. Would love to get the slides as well if possible!
"Canaries in the mine shaft." That's exactly what I've been saying for the past 30 years trying to find out what's wrong with me, and now my children. I always felt that we were the early warning system for the whole population.
How do you manage? How do you manage even for yourself, nvm the kids? Especially in this bonkers world? I'm rly struggling.
45 mints to say: you can NOT directly help EDS by supplementation, BUT you should eat as well as possibly because diet and over all health are related, and you should be as healthy as possible so you can deal with EDS as best as possible. 45 fraking , mints.
So true !
@@ValsVersion sorry to hear that. hope its getting better now.
Lol 😂
Thank you!!! I did not want to watch this whole thing
That was a great presentation and as a 57yrd eds'er diet and nutrition is very important in self management and regulation of knowing which foods affect your inner structure. Trial and error project for me and it's been a long hard road for me. I started by listening to my body after eating certain food, if it was "screaming at me" within 12 hours sometimes less then I knew to omit it from my diet for 12 days and take note of how I felt on that date, keeping a diary is incredibly helpful in kick starting the process into action because being proactive is the key to opening the door to your own success as can be self management program, good luck in your new descoveries and God bless 😊
Is it?
Or are they really making us fool?
I have EDS. I used to have joint pains, stretchy skin and dizziness if I stood for a long period but I got into training a lot and pretty beefed up now. It has helped with my joints. Since I have low body fat now, the skin is not a big issue. The dizziness happens very rarely now.
thank you for this. Is it strength training you do? I am very skinny and unable to gain muscle or weight
Wow Thankyou for writing this - I hardly meet anyone who has EDS -I’ve been suffering from joint pains last 2 years
@@malinichandra6953 I know lots of people with EDS, they are all related to me🙃
@@Star5dg late reply but weight training heavy is NOT reccomended
An insightful and helpful presentation from a compassionate and gifted physician.
I only found out today i have EDS. Im 49 years old, a lifetime of chronic pain and misdiagnosis. This is the first video ive watched and im extremely impressed with the information. I will keep digging
I feel for you. I'm 49 and still can't get a diagnosis. But the shoe does fit. I've spent my entire life battling inflammation & chronic pain.
@@rangerdoc1029 tryed ldn?
Her updated talk on Nutrition, Diet & Supplements is here (2023) and has the slides visible! ruclips.net/video/RpYmDvWp9KU/видео.htmlsi=7XMhJmqaS8XarE8B
The only thing I've found that works is a strict carnivore diet. Meat, butter, eggs, salt. Some limited hard cheese. That's it and I feel better eating ruminants like beef & lamb. It makes no sense other than being extremely anti-inflammatory. Also my pain is inversely proportional to my blood ketone levels.... Again, anti-inflammatory.
It sucks but it works.
Same. Recent isotopic analysis of early human bones has proven that modern humans evolved to be highly carnivorous in the 80 to 100% meat eating range. This plant based eating bias is exactly what is making many people sick. Drop all sugars and grains and starches. Meat.and a little bit of fruit has worked wonders for many people. The most nutrient dense and easily digestible food for a human. I would get sick as hell following this plant based eating advice.
Indeed ! This is not well understood by many . Starchy carbs and grains are many times a problem
It helps mhtfr gene
How long have you been on it? I'm just learning about it and looking for info from fellow zebras.
I foolishly believed all the BS about vegan/vegetarian being the healthiest way to eat for 25 years. After spending the last 10 years being nearly bedbound I was finally diagnosed with EDS and found people such as ribeyracel and Dr. Dawn Leighton. Their info helped convince me to go full carnivore. Even though my BMI was under 17 (chronic diarrhea etc) I have managed to gain some healthy weight and all my other problematic EDS symptoms have been drastically reduced. Carnivore has saved my life - all the MD's I've seen were worse than USELESS.
"When I think of I have four kids. They're going to have kids. Whatever I did before I had them is now potentially passed onto them. It really matters. I'm becoming more and more passionate about it. Sorry to go over on that one." Dr Heidi Collins
Excellent information! Thank you for preparing this informative seminar.
This was so incredibly interesting and packed full of great info!! Thank you for this video!
Well, having EDS and taking collagen with vitamin D, glucosamin and chodroitin has helped both me a lot. My hands particularly were getting stiff, I could not sew or draw, and there was a lot of pain, and the supplements took the stiffness and the pain away after half a year. Everyone is different so that does not work for everyone. I was very sceptical about supplements, but I tried and noticed the difference. There may be some deficiencies that contribute to the symptoms.
Thank you for this awesome lecture! ❤
I wish there were more studies on taking collagen supplements for EDS because it's the only change I made (just to try) and in 6 months I could already see small improvements in my skin and huge improvements in my hair. It's too early for me to notice any real changes or improvements in my joints but it could be possible. We'll never know if this isn't thoroughly studied for an extended period of time on a big enough group. Great info btw 💙
hey camila, how about now? I just saw your comment and was wandering how you are doing now? are the supplements helping? best wishes, heike
How are you now
This is excellent advice! I shall be getting those books 📚👏🏻👏🏻👏🏻
Thank you so much for this video! I am new in learning about EDS and greatly appreciate all your information.
Thank you. Plenty of good information there.
Excellent. Passionate information.
This is very frustrating for me. I was diagnosed with hEDS and POTS this year and all four of my kids are also affected with both conditions, but they are so picky. They have food aversions and sensory issues and I don't even know where to begin to get our diet on track. I eat a wide variety of foods, but my kids will not. And trying the whole "they'll eat when they're hungry" thing doesn't work, because they will not eat. I wish I could speak to this doctor and ask her for help.
Not eating is actually quite healthy. Look up the benefits of fasting.
They are autistic, honey. Adhd, autism, pots and eds go hand in hand. It's not just picky eating. So either you are autistic or your spouse is. Knowing makes all the difference in the world to getting proper treatment.
@@kdelka81 you're right. I learned all that this year. I'm autistic and my husband likely also is. Also no longer able to eat that "wide variety" of foods myself due to mast cell disease.
@@rangerdoc1029 not when it's a child and he is losing weight from it already. I learned it's not just "picky eating." It's ARFID.
I had fussy kids .. now teens . Low zinc affects sensory sensitivity. Increase zinc supplements..!! Test zinc & copper ratio. Give the kids unflavoured “fortibone or verisol or body balance “ collagen powder can be hidden in drinks and great protein have a few tablespoons
Thank you :) I am especially happy you spoke about epigenetics!
Her updated talk on Nutrition, Diet & Supplements is here (2023) and has the slides visible! ruclips.net/video/RpYmDvWp9KU/видео.htmlsi=7XMhJmqaS8XarE8B
This is excellent information
Excellent and so helpful! Thank you!
Is there a copy of the hand out she gives her patients somewhere?
Thank you for sharing this info
Love thee comment of correctness as we are not what we eat.🏅
Usage of as your explanations. 👏
Thank you for your time.
Have a wonderful day.
I wish the slides were included with the transcript.
"People with EDS are the canary in the cole mine..." yes!
What about hormones for menopausal woman and potassium?
do contact our helpline team who can advise and offer support: www.ehlers-danlos.com/eds-helpline/
I like this Dr.
Amazing job!
I've thought of myself as canary in the coal mine since I was a kid!
Oh my God! I’ve always felt that way too
yo where the slides at?
fun fact, she diagnosed me with hEDS and i know her son, we go to the same theater
The link to the PDF isn’t working. Looks like it’s incomplete with the ellipsis.
Who was the author of those books she was talking iij ng about? I couldn't see the info at all.
From the video description: "A PDF of the presentation slides is available at www.ehlers-danlos.com/2017-eds-global-conference/. A transcript is available through bit.ly/2nMe2b4"
@@TheEhlersDanlosSociety These links no longer work.
Ok so if we can't EAT the collagen, what CAN we do to supplement it?!?!
Do contact our helpline team who will be able to offer advise on supplementing collagen in other ways: www.ehlers-danlos.com/eds-helpline/
I supplement Verisol and body balance forms of collagen peptides
Thank you. Is there somewhere I can find the slides?
I don’t find this very helpful. I already know what to eat to be beneficial to my health. I stopped eating the standard American diet decades ago. The problem is my digestion is so weak and poor that I can’t eat it.
Why we see more of the face & courtain and very small picture about the data?
Those who made this video had a low logic level to keep the important information hidden in a very small added pocket on the left side lol.
Obviously no one cares about seeing a face or waste the screen with courtain.
It should be totaly the opposite. That was annoying af while the information she says was detailed & helpful.
MK-2866
Does taking Osti help??
I was told to drink 8 glasses of water a day. I CANNOT! When I see the PT I lie.
This makes no sense.
I stopped trying.. I drink when I can and add electrolytes
I can drink what does it do when you drink if u dint pain goes up next day
🦓
Kratom