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I don't appreciate his smirk when talking about how patients hope there is an easy fix. there's nothing funny about having to have revision surgery.

I just had my surgery last week I broke ankle in April it has been a long journey but I'm ready for it to heal completely ❤

Zomata

EDS Society has a worldwide registry for ppl diagnosed with EDS/HSD and not yet diagnosed...I encourage everyone to join the registry. Researchers are looking at the data produced by the registry and using machine learning and AI to glean statistical patterns. Also when researchers want to do research, they can write the grants with real data and if you agree to participate in research, some may be contacted.

Antibiotics don't work stop lying

1. Time is 5 to 6 AM 2. Outside temperature is below 60F 3. Get out from your bed 4. Don't change any clothing 5. Walk outside, backyard/garage/etc 6. Stay outside for 5 minutes 7. Mucus coming out from your nose, very normal. 8. You refuse to wear warm clothing at this moment? 9. Get ready: sore throat/stuffed nose/fever A. If the cold temperature didn't make you sick then what was the cause?

On May 17, 2024 my wife experienced Transient Global Amnesia from using Atorvastatin

I am averaging G 113 ro mostly 96 , 93 , 98

I have be having very low blood pressure the last few weeks. Had blood pressure blood work take and it all came back normal , but I’m still getting very light headed and weak all the time .

two years since 2021 to 24 full recovery 3 appointments separate 5 hospitals

Thank you for bringing awareness and making a positive difference. Great information.

WTF? a news caste?

Which medicines cause bone loss?

As he said that things snap, crackle, and pop my foot started singing the songs of its people

Though OA, FM, Hashimotos, Celiac, and probable meneires and Sjogrens, too, Fuch's and Dupuytren's, too prior...the diagnosis of H-EDS did finally come at age 68. The pieces of my life appear to fix. So many overlap but since bracing helps, know my ligaments are like string.

So far is been 5 weeks. The pain for the most part has significantly reduced. I have increased mobility and am able to do some athletic tasks, however there is still a lot of stiffness and pain when overstimulated. I'm wondering how long before I have my ankle sprain 100% healed

This Dr is full of shit. He says no, you can not reverse Harding , his next comment was with stations drugs you can. He's a pill pusher

Ankle injury with surgery plate plus screws in order to heal it will take 6 months to a year.i did a lot of cycling at home .swimming in local swimming pool i used to like run in deep pool in order to build my muscles in the summer i used to go g for along swims in the sea .i started running after one year short runs

I think I was sent to a rheumatologist to shut me up so they could again say its stress however within 10 mins he knew it was heds .

Thank you I'm 60 and got a diagnosis of eds .been ignored for years.drs just treat all these symptoms as individual things .it's looking like pots which I think the Dr's think I am .hope I'm going to get the extra test and support I need cause iv not been looked After just turned away with more tablets.

Very useful information! I got this diagnosis at 42 . I didn’t know why I have so many health problems. Doctors explained by EDS only the frequent subluxations, and tendinitis but didn’t find an answer for multiple allergies, food intolerance, POTS , neurological problems, IBS, gastrointestinal hemoragia and asthma. They believed I have an autoimmune condition that affects colagen . Thank you very much for this presentation, it is the most informative I have seen on this topic. Brilliant!❤

I fell on my tailbone a month ago the pain very severe my left leg is weak the pain goes to the groin area

Have you ever heard of Autonomic Nervous System Disorder Dr.? Most of them are pill pushers and have no clue!

I know this post is old but I had ORIF surgery. I had a trimalleolar fracture with a linsfranc injury on my foot 09/23. I’m 5 month out and I’m still having trouble with range of motion. Still some pain when I try and sleep and also when walking. Has anyone had the same injury? Can you tell me how long it took for you to at least be able to walk again?

It seems you are in Ohio. Do you have offices statewide? This video has summarily encompassed my entire life of medical misery, multiple dead end diagnoses with nothing in the way of a cure to show for it. I desperately need help!!!! Please....where can l contact you?

Phone number?

54:20 just want to say that i've heard lots of heds people complain about their joint laxity getting worse on birth control with progesterone (which is any type really but especially the progestin-only types). i'm not a doctor just a patient, and this is mostly from word of mouth, but there are some studies and articles about joint laxity and birth control. just not much about eds patients specifically.

They burned my left lung with radiation. Never told me it’s been four years. Just found out by a kettering, Doctor. I knew this could happen so I wasn’t surprised. What made it surprising was Tri Health and never told me.

B-north sucks

They leave them in the waiting room for hours. Leave patients in the hallways and beds. Giving wrong medication’s wrong medical advice. And sometimes keeping them two days in the ER because they say they don’t have rooms. If you have a life or death situation, don’t take them to Bethesda North.

Is it conceivable that the root cause hEDS is a lack of stomach acid leading to an inability to properly break down proteins, leading to multiple nutrient deficiencies, leading to inability to properly produce collagen, leading to weakness in the GI system (including the gut lining), defects to mucous membranes throughout the body, a permeable gut, a lack of electrolytes to support the central nervous system, a weakened immune system, resulting autoimmune issues and then a vicious circle? I am 62 and have suffered from multiple autoimmune conditions and most of the symptoms of hEDS since childhood. The medical community hasn't diagnosed my condition, despite all of the symptoms being present. Nobody joined the dots together. I only became aware of the condition as a result of the current awareness campaign. Throughout my life, I have been left to manage the condition myself. Any drugs or injections that doctors or physiotherapists prescribed did little to mask the symptoms and caused side effects that often made matter considerably worse. Asthma inhalers, for example, caused me acute pain and made my symptoms worse. The only thing that worked was oral steroids, but the side effects of these are nasty, so they were not a viable long-term solution for me. I gave up with the medical profession a long time ago and have managed my symptoms as best I can by myself whilst always trying to look on the bright side. My philosophy on life probably helps. It is; "Shit happens, deal with it." I console myself that there are a great many people much worse off than me. Over the past five years, I have spent a lot of time trying to understand how the human body works in the hope that I could find a natural way to improve my symptoms. As a result, I altered my diet to exclude or severely limit fodmap foods, added various supplements including potassium, zinc , magnesium, calcium, vitamins D3 and K2 (an initially high dose that I have since substantially reduced), sea kelp, a multivitamin with minerals, collagen and turmeric. I eat almost no processed food and have a huge variety of fresh fruits, vegetables and salads. I find beef, potatoes, bananas, oranges, pineapple (very good for breaking down proteins), cabbage, kale, brussel sprouts, spring greens, pickles, kimchi, sauerkraut, lemon water, red wine and port (in moderation) to be particularly helpful. In order to improve digestion, in particular of proteins, I take pro biotics, apple cider vinegar, digestive enzymes, pepsin and quite a high dose of betaine HCL. I also got myself very fit, firstly by walking, then introducing an elliptical cross trainer, then hill walking. Despite being mildly asthmatic, I managed to increase my VO2 max to 52. I am now able to do mountaineering and this now includes mountain walking in winter weather during periods of snow and ice. This hasn't been an easy journey. I suffered repeated injuries and frequent partial dislocations of my ankles, knees and knee caps, but just kept persevering. It was three steps forwards and two steps back, but the progress outweighed the setbacks. I was able to objectively measure my progress using the computer on my cross trainer and a Fitbit fitness tracker (other brands are available). After one injury, I bought some compression tights and discovered that these significantly helped my symptoms. I now wear compression tights and a compression top most of the time. Isometric exercises have been a great way to build strength and balance for me. I wouldn't say that I am cured, but my symptoms are massively improved and occur much less often. My joints have gone from weak and unstateable to very strong and much less unstatable. I have the strength to much better protect them and this is a real confidence booster. I've now reached the stage where my digestive system is sufficiently improved that I can now tolerate very small amounts of foods that I've had to avoid for a very long time. It probably isn't possible to cure joint hypermobility, but improving my digestive health has given my body the necessary building blocks to strengthen my immune system, improve my nervous system, and to support the strengthening of my muscles, tendons, gut lining etc. Don't expect instant results. It's easy to boost plasma levels of nutrients, but a body full of cells that are possibly all suffering from significant nutrient deficiencies is going to take a long time to heal. For me, this isn’t a short-term change of diet plus exercise. It is a permanent lifestyle change. I have noticed that as my condition has improved, the amount of supplements I need to take is now progressively diminishing. My digestive system isn’t perfect, but it is the best it has been at any time during my life. My autoimmune system has improved immensely, to the point that I no longer need to take daily antihistamines. My experiences are likely different from others but may suggest an avenue for further research? Rather than trying to mask the countless symptoms of hEDS, finding and addressing the root case is more likely to provide long-term relief for sufferers.

Can decreased blood perfusion to the Brain happen in EDS outside of pregnancy?

Im 53 and can still touch the floor with my hands flat. I always bent my thumbs to my wrists as a joke, my skin is able to be pulled out like elastic and it remains soft and puffy. I would freak kids out at school by clasping my arms behind my back and bringing them forward hehe. Cant do that now. I have no wrinkles and look younger than I am. Genetically we have in our family Muscular Dystrophy and know I have MDS. I live in the outback and doctors just don't have skills to help me. At 19 I ruptured discs in my back and it has been chronic pain since - from Army training. The pain never left. I pop my own back, I know what to do. My left shoulder dislocates alot and if I dont watch my knees they pop out all the time. I have hyper huge calves part of the MDS. My disc was L4 L5 joint disfunction. I have issues with my left thoracic. My eyes droop. I just need a pill to swallow now. Burn me and spread me in the ocean.

Anyone else suffering with constant ear ringing and dizziness. ? I had all these symptoms until I came across Dr Liam ogbebor herbal centre RUclips channel , his treatment has helped me and a lot of other people suffering with these symptoms, all my symptoms are gone and my full health has been restored, thank you dr Liam ogbebor❤--;🥦

12:34 I would bet my life savings that this is more to do with the socialization of men and women. Women are allowed to talk about how they feel, men are taught that life is pain and to suck it up and deal with it. Men generally don't seek medical treatment unless it's life threatening, and chronic pain is not life threatening. That, plus the overall lack of social support amongst men means nobody is paying attention to their health from the outside either(unless you want to talk about how almost all medical research is done on men and assumes women are the same). The only reason I'm still alive is because I've had girlfriends who paid attention and PUSHED HARD for me to see a doctor. I had lots of stuff going on for example I would have died from colon cancer in like one more year had I not been forced by my loved one to get a colonoscopy when I did. I just worked through the 9/10 pain days because that's what you do when you're a man. You produce and provide. edit: I'm 37

Omg a year 😢😢i broke 3 bones tore ligaments and was dislocated. My surgery was November 7th of this year. Its such a long hard recovery

How are you doing. They operate me but I didn’t get a cast. I started -by my own choice- with physio 5 weeks before the specialist said. I arrange this with the physio of hospital. I didn’t want to lose mobility. I am so scare. Next week I will get my photo to see if I can start standing in my leg

Don't let your knees go backwards when you sleep. The weight from blankets. This cuts off circulation and will enlarge your heart.

Mast cells are weak too. That's the problem.

I strongly suspect I have EDS of some form. I've had dislocations and hyperflexible joints pretty much my whole life. I meet almost all the markers (I suspect I would meet them all if my spine wasn't entirely fused and my elbows werren't dislocated from birth). I never considered mast cell activation as a symptom but I hit all of the gastrointestinal markers. Intresting. Purberty was the worst. Everything dislocated. Even my hip which I needed surgical intervention for. I'm now middle aged and currently in my 'you have early onset osteoarthritis and you're achy all the time! Oh, and here's another disolcation for you. Congratulations!" part of my life. It's...not fun.

Prolotherapy? For EDS? Because we need strength in our joints, to get better.

Thanks for this It’s very valuable information to aid the suffering and the care teams. Very very much appreciated

who do you recommend in Cincinnati to treat someone with EDS? having a challenging time trying to find someone.

Please try not to say uh just breathe in and go on it’s much easier to listen to 😊 no disrespect meant and thankful for the discussion

This was so informative, and it feels so nice seeing people with stories so similar to my own in the comments. Some of my earliest memories are of me complaining of back pain and my grandmother telling me I was too young. Only my mom ever believed me. My mom has since been diagnosed with fibro, and we are investigating EDS for the both of us. It has been so hard navigating the world not knowing. My mom destroyed her back at a previous job from lifting something heavy and twisting. I am still dealing with ongoing neck issues just from one wrong move while working retail almost a year ago now. And those pains are on top of all the other aches, pains, crackles, and pops. I'm so thankful to live in a time where we can do this sort of research when doctors refuse to take us seriously.

Will the ankle bone ever look normal I broke both in One year August 2022

Hi Dr Robert I am happy for you. You are. Great doctor Many blessings for you

Awesome and informative video!

Thank you for this! We want to start our family and I knew I would have complications. After a LEAP procedure, my undiagnosed/diagnosed EDS, and a family history I knew I would have complications. I'm nervous going forward, but information gives me courage. Thank you again for sharing your knowledge.

Hi, I would love to have a copy of this presentation if available.