This isn't your fault Heather! You and your team tried everything to save Matt, I know that despite the efforts you all tried your best for, unfortunately you weren't able to save your son. Thoughts are with all of you. 🙏❤🤲🤘

Armenian prouding is the best

When my mother was very ill in hospice tge same thing happened. This is culture coming before the recovery of others.

My father had brain surgery then he returned to the 4 bedroom. All in the room we in various stages of recovery. When a group of people stood around an Islamd man's bed and sang to him. It wad inconsiderate.

Way too many interruptions by the reading panes.

Anyone who have surgery exam tomorrow 😊

What if you have random tissue manifestations but only a hyper spine. Your youngest son has all hyper joints. And my middle had the appearance of marfan. I don’t know if I should see help.

🦓 Thank You 🦓

This disorder affects the whole body and yes we get depressed it’s never ending too. Also Thank You to the dam vax everything escalated in flare since 3 dam years now pissed off is saying it mildly. Now compressions to deal with too besides the other issues we have grrrr

I love working in the Operating Room Theatre.

I had no difficulty with the sound, clear and informative. Thank you

Dr. Amer Suleman in DFW, TX is a cardiologist who works with a lot of EDS patients. I went to him for POTS symptoms and that led to me getting also diagnosed with EDS. Knowing this information has changed my life and validated so much of my personal experience- and also, how this wasn’t discovered before is super frustrating. There were only a million signs 🫠🫠🫠 Turns out it’s not “anxiety and depression.”

I´m from France and I love seeing the maori cultural practices like the hangi, the boil-up, the haka and the ram-raids

If the treating clinician is not obligated to follow the patient's wishes or apply treatment outlined in the plan and it is valid d evidenced best practice treatment, where is there any accountability in reasoning not to do so? Are there any frameworks for treating clinicians in reasoning not to do so? What is the next step for families/whanau to see that it is applied?

The WHO checklist - well illustrated by the team

Hello, 🐒🐒🦮🐕🐶 God the Father loves you so much that He sent Holy Sinless Jesus (His Holy Son) to earth to be born of a virgin.Then, to grow up and die on a cross for our sins. He was in the tomb for 3 days, then Father God raised Holy and Sinless Jesus Christ (Y'shua) to Life! He appeared to people and went back to Heaven. We must receive Sinless Jesus sincerely to be God's child(John 1:12).After we get saved by grace through faith in Christ, if we truly love the Lord Jesus Christ, then we will obey Jesus(John 14:15). Mark 1:15 "And saying, the time is fulfilled, and the kingdom of God is at hand: Repent ye, and believe the gospel." Jesus said in John 14:15 "If you love Me, keep My commandments. "There's a real hell. It says in Revelation 21:8 "But for the cowardly, & unbelieving, and abominable, and murderers, & immoral persons sorcerers & idolaters & all liars, their part will be in the lake that burns with fire & brimstone..." Please sincerely receive Holy Jesus and put your true faith & trust in Him today and please repent. Will you have a Real encounter with Holy Lord Jesus (Y'shua is His Hebrew Name) and stay in a Genuine relationship with Him daily please?

I was diagnosed with eds as a kid in the early 90's. I finally got pregnant after several miscarriages and the pregnancy made my eds symptoms go out of control. Im unable to work. I applied for disability and i got denied. My doctor's are not listening to me. I need help

Omg i wish i could be made pain free. Im wheelchair bound and drowning in overwhelming pain. I also have Syringomyelia and loads of comorbid conditions. No help here in Oklahoma

I was born in Timaru 1963. Always had hyper 8:24 joint mobility. I am still having a hard time with Doctors in Australia. I live in Darwin now.

so beautiful.

If you've got EDS, google 'The Fibro Guy'. You're welcome.

I have had eds/hms for over 40yrs, and so much stuff hits us out of nowhere, that frankly the patient becomes more expert. I would love to see a doctor or consultant who suffers from chronic eds/hms,,and let them experience the daily hell it is and the ignorance and cynism so many doctors treat us with.

I have EDS, POTs and chronic vertigo.

It’s not genetic, it’s the hereditary pass on of late stage Epstein Barr Virus, the toxins the virus release cause this, it can be healed

I was party trick girl reluctantly lol

I'm 45. I've recently trained to be an RN in Canada, and have been practicing for about a year. I'd never heard of EDS before my girlfriend mentioned it last week. I'm almost certain I have it. Anyone know if chronic headache is a symptom?

Do we need the adverts?

Dr assumed they wouldn't be able to pay😮 Because I had dreadlocks.Dr assumed i was takibg drugs and plied my 5 week old baby with morphine codeine diazepam pethadine only to ween him off these drugs and my son came back with brain damage...in their reports they wrote my son had hypothermia and decided to call it sids

Embarrasing in its simplicity and sound is poor

Hurrah for realising we are so many.

Omg I think this is what I have. My mother has it too and both of my adult children. My son has dislocated his elbow twice and his shoulder once. My daughter has had digestion issues. I live with chronic pain. But the three of us can do great party tricks together. Where can we get help? We are in Wellington.

There doing away with toilets in home base if you get taken short go into the bushes great Britain its sticky smell Britain when thay say people can't manage to go to the loo im nearly 80 years old I've already closed down one company habels for not providing facilities home base ist providing facilities im 80 I can't hang on till I get home Peter hankin

Anyone in Christchurch have advice re getting a diagnosis/know a GP with good awareness of EDS?

Hi I’m from Edmonton Alberta Canada i really need help there’s no drs here to help with EDS and there telling me only women can get EDS and I know it’s not true or is it I’m entersex I don’t know if that makes a difference please get back to me. I have no life I can no longer work every time I try. I pop my joints I get injured I can barely move. Takes me about four hours just to get out of bed. It’s to the point where I’m extremely depressed. I’m begging you help me.

Hi I’m from Edmonton Alberta Canada i really need help there’s no drs here to help with EDS and there telling me only women can get EDS and I know it’s not true or is it I’m entersex I don’t know if that makes a difference please get back to me. I have no life I can no longer work every time I try. I pop my joints I get injured I can barely move. Takes me about four hours just to get out of bed. It’s to the point where I’m extremely depressed. I’m begging you help me.

Hi I’m from Edmonton Alberta Canada i really need help there’s no drs here to help with EDS and there telling me only women can get EDS and I know it’s not true or is it I’m entersex I don’t know if that makes a difference please get back to me. I have no life I can no longer work every time I try. I pop my joints I get injured I can barely move. Takes me about four hours just to get out of bed. It’s to the point where I’m extremely depressed. I’m begging you help me.

Hi I’m from Edmonton Alberta Canada i really need help there’s no drs here to help with EDS and there telling me only women can get EDS and I know it’s not true or is it I’m entersex I don’t know if that makes a difference please get back to me. I have no life I can no longer work every time I try. I pop my joints I get injured I can barely move. Takes me about four hours just to get out of bed. It’s to the point where I’m extremely depressed. I’m begging you help me.

Hi I’m from Edmonton Alberta Canada i really need help there’s no drs here to help with EDS and there telling me only women can get EDS and I know it’s not true or is it I’m entersex I don’t know if that makes a difference please get back to me. I have no life I can no longer work every time I try. I pop my joints I get injured I can barely move. Takes me about four hours just to get out of bed. It’s to the point where I’m extremely depressed. I’m begging you help me.

Hi I’m from Edmonton Alberta Canada i really need help there’s no drs here to help with EDS and there telling me only women can get EDS and I know it’s not true or is it I’m entersex I don’t know if that makes a difference please get back to me. I have no life I can no longer work every time I try. I pop my joints I get injured I can barely move. Takes me about four hours just to get out of bed. It’s to the point where I’m extremely depressed. I’m begging you help me.

What is the name you mentioned of the PT specialist?

You be picky, we can't soften this type of thing anymore for non-Maori. They want us to say their names properly.

I recently tripped over and dislocated my shoulder. So much pain 😢

My oldest son had ehlers danlos syndrome he had the worst kind and was hospitalized most of his life in and out of the hospital he passed away at the age of 33 . I was told that the eds is passed down from my mothers side and

For 30 years no doctor has ever been able to give me a diagnosis. I’ve lived in severe pain for years. Barely able to walk, lost my job and have had 8 orthopedic surgeries. I was however kicked out of the Army in 1981 for EDS.

The horror of watching the wilful mutalation, deliberate obvious brain damage and systemic physical harm being inflicted on these people by those claiming to be "health providers" and "care givers" when in reality they are absolutely the opposite. Health destroying poisoners incapable of integrity, honesty or objective insight and self observation of their part in the meat processing factory of this industry, that relies on the capture and gutting of human beings for corpse rat profits of average some ten thousand dollars per victim per week. These people are treated as captured milking cows for the big pharma multinationals. 95% of their brain function disabled. Repeatedly told they are "mentally unwell" and that these majic pills will cure it, when the pills create all the symptoms they are claimed to prevent. This is cannabilism of those capable of feeling, by those who are trained to not. But to make a convincing act of compassion. But adhere to a coded standard called "professional withholding of empathy". They take wages and salaries to remove all quality of life from their victims, and shorten their lives by an average of 25 years. The sick ones, delusional, psychopathic, Narcissistic and outright dishonest with themselves and those they wish to believe they are helping are those paid. The healthy ones, expressing natural emotional responses to their trauma are their prey. Kept in depression and limbo. Unable to heal. Being slowly drained of all vitality, all spirit, all connection to community, by the predators that pretend to care. Disgusting!

There is limit to having the medical professional work on your body when they get things wrong 90 % of the time working on you thinking they no and understand the complexity of H/EDS and all other types, and bits you have from other types that you may have do fit into a neat little box the medical professional like to do,, 🙏 amituofu

We also have larger amygdalas generally and more reactive flight or fight systems.

Ketamine RFA

Was it false hope though? Was it right to give them hope?

Also we dont know any details of this particular story, why was the advice given, what was the outcome, what happened to the patient? This is unfair and offensive to the oncologist involved.