What Causes Ehlers-Danlos Syndrome?
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- Опубликовано: 9 фев 2025
- Watch the full episode: • The Science of Ehlers-...
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@notcorry / @lukecutforth
I am an advocate with EDS and I specialize in EDS and it's comorbidities, causes of comorbidities, and treatments as well as pediatric presentation of EDS. If you want a fun series to cover, cover the comorbidities.
I'm currently being tested (kind of?) for it, I was diagnosed with ASD and ADHD a year ago and now I got a lot more to learn 😭, honestly it's rather confusing
What the actual fuck is fun about EDS??? What an insensitive thing to say. Pediatric, you say? Fantastic. Horrible.
I only heard about EDS watching an interview of Lena Dunham a few years ago.
i have hEDS the paid is debilitating also Ehlers-Danlos syndrome is not 100% genetic there are spontaneous gene mutations that cause it
I got r/hEDS from my father, Not so fun fact but maybe interesting/essential fact It is more common to have cardiovascular EDS comorbid with hypermobile EDS, especially if your parent also has both like mine. These two types of Ehlers Danlos syndrome are codominant traits when comorbid, meaning that you are going to pass them down to your child at a 50%-75% likely rate, depending on the partner and their gene expression.
how bad is the pain and how bad are the the dislocations getting Are you just subluxing or are you getting full blown dislocations? If so, you might want to look into corrective integrative neuro kinetics it sounds some promising research and has shown to help with pain management. There’s also a study/reasearch being done currently it is very promising in replicating aquatic -based collagen in mammals using tissue engineering in fact, it may even be better than the college and we currently produce because it's excellent biocompatibility and biodegradability, are easy to extract, and pose a relatively low immunological risk
@@Tvfted_Menace so in the near future, we may have a cure for Heds fingers crossed
@@nogard-lanreteprettypeas7624
Oh my lord this is so cool! I don't have full dislocations but I have constant spraining and pulled muscle, I bruise constantly, and if I move the wrong way I get the half dislocation where it hurts like hell and I have to sit down for a minute and just try to relax, and move my joint for it to pop properly back in. My pain can only be described as mild flu body aches, I take naproxen for it, the only thing that really helps me is naproxen. I get constant fatigue, stomach issues, horrible acid reflux, and migraines oh the migraines... I can pop my thumb join out and it freaks ppl out alot, I can also lift my leg behind my head but it hurts sometimes. I've stopped performing party trucks because the older I get (18 now) the more my hips hurt, feel like they're grinding together, or are gonna pop off or give out. Not to mention the link between Neurodivergency and EDS/hypermobile syndromes, I have ASD and ADHD.
You've shared some very valuable information with me! Thank you! I was planning to go to aqua therapy / chiropractor that specializes with people who have EDS. I'm gonna have to look into this!!! Thank you!
@@nogard-lanreteprettypeas7624 I sent you a comment and it's miraculously disappeared 😭
My son has asd and very bendy he has very bad balance and falling arches flat feet waiting to see op doctor hes 18 now
WOW is so odd to find a man with EDS, I've heard men feel less pain?? is it true? how do men experience it?
Its true i think eds is less common for male and those who do have eds have mostly a milder form and symptoms start to be noticeable around 35. I m 37 and i started to have feel more pain and fatigue 3 years ago
I have all 4 syndrome :/
Research: "Ehlers-Danlos Syndrome and the carnivore diet"
There are testimonies of people overcoming EDS through diet.
Example?
Interesting
No matter how much dieting, my hips will always dislocate, vegans even have Ehlers Danlos, you just believe everything you see on the internet
Like I said, in the other video, I see you spamming EDS videos with this misinformation. People with EDS require a very balanced diet with only clean meet and to avoid made such as bacon and sausage and red meats like beef. There are many reasons for it, through on the carnivore diet can cause high blood pressure, high cholesterol, and heart disease. It can also cause kidney failure, and irritable bowel syndrome symptoms to become extremely worse and cause much more acid reproduction in Gerd. If you have EDS, you have a very highly likely chance of having IBS, GERD, inherited high cholesterol, and heart disease. If you’ve learned anything from the liver king please learn that an all meat based extreme protein diet will not make you healthier. Too much of a good thing becomes a bad thing very quickly, and I know this because I’m currently taking a forensic toxicology coarse. You are spreading misinformation. I HAVE EDS, I should know. I eat too much of anything and I automatically feel sick, when I eat the recommended EDS diet to help balance nutrition and vitamin levels, because we tend to have deficiencies of nutrients, I feel so much better. And I can account for most people if they follow a well-balanced diet. That doesn’t mean you can’t have snacks, you just have to take into consideration what those are going to do to your daily diet and make sure that you don’t eat the same thing every single day because that causes weight gain, such as eating half a tub of ice crème a day 😂
@@g00seman
Don’t Believe this dude,
as someone with EDS this persons comment is medical misinformation that can lead to severe health concerns in the future. It causes heart disease, high cholesterol, kidney failure, further nutrient deficiencies, chronic compaction, increased acid production of acid reflux / acid aspiration in the esophagus, disrupting the gut Microbiome further increasing complications in IBS GERD in EDS, too many of specific amino acids such as Trypophan, Cysteine, and Methionine that is shown to increase stress aging factors and cancer risk. If you’ve learned anything from the liver king, it should be that an all meat-based diet is not healthy for you whatsoever.
People with EDS are advised to incorporate foods rich in potassium, iron, magnesium, and calcium, such as bananas, leafy greens, and dairy. EDS people are notorious for having low vitamin D, B12, and iron. When we eat meat we need to choose low fat protein sources that are high in good fats like omega-3 fatty acids, we need to eat iron rich foods, which mostly means adding clean meat like chicken and fish. For people with Ehlers-Danlos syndrome it is essential to increased amount of whole grains, high fiber cereals, whole wheat bread, and oatmeal for breakfast. We also need high fiber nutrient rich fresh fruits and vegetables. Carnivores are at risk of inadequate intake of fiber, PUFA, a-linolenic acid (ALA), folate, vitamin D…, vitamin E…, calcium, and magnesium… a lot of these things are things that people with EDS already have deficiencies in and me to eat other foods that are not in a carnivore based diet to help prevent these deficiencies from getting any worse. It is also said that it is critical that people with EDS should not eat a lot of processed foods, if you have to then try to go for the healthier processed food, or seek out fortified alternatives to foods that are inaccessible to you on this list. Most meet bought at the store is extremely processed… you need to watch out where it comes from and what the animals fed before you eat it, so that you know it’s healthy.
There is nothing that can CURE this. Just like telling someone with type 1 diabetes that it’s not a problem with their genes ability to produce the proper hormone, it’s just a problem with their diet. This a very good representation of what you’re saying here, about EDS, just using a different disorder to metaphor their likeliness. There is no cure for a congenital syndrome/birth defect. The only ones that can be “cured” are usually through surgical procedures, such as a club foot or hernia. But EDS is not one of those conditions. It is a problem with the genes, there is no surgery that can fix the collagen production in your body and hormone response to healing bones. You cannot cure some thing that is on the genetic level unless you, my friend have figured out genetic engineering and gene splicing for humans on a safe level.
People with EDS tend to have a higher level of comorbidity with inherited high ldl cholesterol, this is when the hormone that helps regulate and break down the LDL cholesterol does not properly function, within that being said, eating high amounts of meat is not going to fix high cholesterol if anything it’s going to make it worse depending on the meat you’re eating, eating excessive amounts of meat will cause your cholesterol to become worse and lead to more heart issues. Healthy meat will cause your HDL to rise, red and fatty meat, will cause your LDL to rise, and we don’t need either of these too high. A proper moderation needs to be set in place. People with EDS should not also eat excessive amounts of meat as we are also comorbid with IBS and Gerd. It is a notorious fact that eating tons of meat can cause inflammation and worsen IBS symptoms. Foods that have concentrated amount of fat, such as red meats like bacon and sausage, can induce acid reflux symptoms aka acid backing up into your esophagus on already sensitive tissues aka EDS tissues more susceptible to damage and pain.