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Пікірлер
@horse4you 13 күн бұрын
EDS, POTS, RA, Lyme Disease and RA... Lovely....🤕 Such a mess. Pay dearly for treatment or do nothing and suffer more. Great! $10K in already, no success.
@chanelhati4241 25 күн бұрын
THATS WHY THEY CANT BE BOTHERED SAYING OUR NAMES WORKS BOTH WAYS DUMBASS
@AtihanaJohns 28 күн бұрын
I a Maori have had an excellent experience and awhi after I had an accodent and had 13 days in Taupo hospital . Their after hospital care including equipment was also great at home.
@incurablyawesome2024 Ай бұрын
Thank you so much for sharing your story. I'm a zebra and was just diagnosed this year. I decided to create a KZbin channel to document my journey and help others. Sending you many positive vibes and strength. I know it's far from easy. 🩷🦓
@JoysJourney1111 Ай бұрын
Im so sorry you went through those surgeries 🙏🙏
@kayla_cola 3 ай бұрын
Thank you for sharing the immense and tragic loss of your son for the education of better health practices. You’ve proven to be a great guide towards steps for critical thinking during intense emotional crisis. You are an example of strength through the dark. You’re amazing in your grace through a loss we as parents always fear. Thank you for sharing your journey.
@sylviaredmond8386 3 ай бұрын
I’m 65 years old and have dealt with many of the symptoms mentioned here. I have been dismissed numerous times by health care professionals. I didn’t know what to ask, but my symptoms were so disorganized I couldn’t explain myself. I finally heard about EDS and asked my recent physician about EDS and he immediately dismissed me stating, “that has to be diagnosed in childhood”.
@MsMesem 3 ай бұрын
or , "no it's not that" because THEY want to make the diagnosis and feel big.
@RazzLerSkedaddLer 3 ай бұрын
She has an ASMR voice 😊
@jennyreid9048 4 ай бұрын
Sound is good from my end :)
@annemackay-ib4gy 4 ай бұрын
EVERY LIFEMATTERS, EUROPEAN MAORI NEED TO ACCEPT MORE RESPONSIBILITY FIR THEIR HEALTH AND LIVES. SO COME ON STOP TRYING TO BLAME OTHERS
@manjubas1634 4 ай бұрын
Very nice to know about and watch beautiful cultural practices . This gives insight into cultural practices which has greater implications on health outcomes
@Fuphyter 5 ай бұрын
I wasn't diagnosed until my 60s. My skin feels like it's on fire always. I need bi-lateral reverse shoulder replacements and my other knee replaced at 67. I had knee issues at 12. I put my thumb to my wrist all the time. I had major knee surgery at 19. I've been on disability for 13 years. Barely surviving financially. Cervical and lumbar spine are shot. The pain is unvbearable. I'm constantly nauseous. Carafate stopped working.
@horse4you 13 күн бұрын
Lord. I feel your pain and am right there too. Have you tried a food sensitivity test? Mine was eye-opening and I was able to put my POTS on the sideline. Now it's MCAS getting me. The #liondiet took away the rashes, but it hasn't really helped my RA. Wishing you luck.
@PoliteTatira 5 ай бұрын
K
@SebastianC701 6 ай бұрын
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. 🙏❤🤲🤘
@armeniagag 7 ай бұрын
Armenian prouding is the best
@michelenickolls5954 7 ай бұрын
When my mother was very ill in hospice tge same thing happened. This is culture coming before the recovery of others.
@michelenickolls5954 7 ай бұрын
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.
@bmac6645 7 ай бұрын
Way too many interruptions by the reading panes.
@carolinecaiger6717 3 ай бұрын
They were titles for each separate item?
@Maryamusse 7 ай бұрын
Anyone who have surgery exam tomorrow 😊
@beverlyquigley6608 8 ай бұрын
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.
@christoffeledmund2853 8 ай бұрын
🦓 Thank You 🦓
@donnacostarella4241 9 ай бұрын
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
@onyemelukweechezona7760 9 ай бұрын
I love working in the Operating Room Theatre.
@WandaPerham-bj9km 9 ай бұрын
I had no difficulty with the sound, clear and informative. Thank you
@LaneySweet 9 ай бұрын
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.”
@ourpeople-g7r 9 ай бұрын
I´m from France and I love seeing the maori cultural practices like the hangi, the boil-up, the haka and the ram-raids
@sarahrowland9819 10 ай бұрын
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?
@graceomollo9782 10 ай бұрын
The WHO checklist - well illustrated by the team
@JazzyGinger1 11 ай бұрын
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?
@meganmarts5769 11 ай бұрын
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
@Lionessliving 11 ай бұрын
Are you in uk? I went private to see Dr Paul Brennan in London. Diagnosed and now have a treatment plan. I pray that you get the validation and help you need.
@meganmarts5769 11 ай бұрын
@@Lionessliving I'm in the US
@theangrytiredzebra Жыл бұрын
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
@patriciagriffin1505 7 ай бұрын
Yes help not as available in US as other countries
@horse4you 13 күн бұрын
No help in the US. Stuck in the cyclical system.
@amyamy07 Жыл бұрын
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.
@newdreamlife2946 Жыл бұрын
so beautiful.
@DS-rd9qn Жыл бұрын
If you've got EDS, google 'The Fibro Guy'. You're welcome.
@alecbrown66 Жыл бұрын
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.
@melanievando2040 Жыл бұрын
I have EDS, POTs and chronic vertigo.
@KBB-nf1dr Жыл бұрын
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
@Lionessliving 5 ай бұрын
How? Intrigued
@KBB-nf1dr 5 ай бұрын
@@Lionessliving knock down the EBV
@marsy1480 Жыл бұрын
I was party trick girl reluctantly lol
@natronbetticus Жыл бұрын
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?
@irishgirl81498 Жыл бұрын
For sure - the ehlers danlos subreddit is a great place to search for specific symptoms.
@strangequarkproductions4942 7 ай бұрын
Yup. It's very common. ❤
@ginettemusker7872 Жыл бұрын
Do we need the adverts?
@KathrynKersyes Жыл бұрын
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
@ClareRussell-q6z Жыл бұрын
Embarrasing in its simplicity and sound is poor
@viviengiannacaple-chuley4408 Жыл бұрын
Hurrah for realising we are so many.
@catherinechandler3250 Жыл бұрын
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.
@kcw7649 4 ай бұрын
I know you posted this a while ago, but ask to see a physiatrist (they are MD's who specialize in body mechanics). But before you ask your primary care person for a referral, start by checking physiatrists online who have excellent reviews. Then call them and ask if the Dr. treats EDS patients. These dr's are most equipped to also know how to diagnose and treat instabilities and can refer you to for appropriate bracing (big help), and sports taping (that stabilizes tough areas to manage like shoulders). Look for clothing that is made specifically for people with EDS. They make undershirts and other garments that have elastic bands that hold you together which reduces pain. Find a physical therapist that does water therapy. Try to see a naturopath that has experience with immunology because EDS is a disorder involving protein metabolism so we have differences in how we absorb certain nutrients, and how effectively we make hormones, enzymes, and neurotransmitters. Being deficient makes it even harder to heal and function cellularly. My naturopath (with degrees in biochemistry and organic chemistry) made some changes that really improved my son's and my life. Also, they have found a link to autism spectrum disorder, so that is important to watch out for. Lastly, your symptoms can be much better or worse within the family due to what is called penetrance of the gene. My sister has it but is mildly affected. I am wrecked. Best to you and your family.
@peterhankin1670 Жыл бұрын
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
@desertpea95 Жыл бұрын
Anyone in Christchurch have advice re getting a diagnosis/know a GP with good awareness of EDS?
@jeremysargefield9434 Жыл бұрын
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.
@jeremysargefield9434 Жыл бұрын
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.
@randomname4726 11 ай бұрын
That's terrible that they told you that. It's not true at all. My husband has EDS.
@jeremysargefield9434 Жыл бұрын
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.
@wiseoracle9328 9 ай бұрын
Hi there, EDS is more commen in women, but it can affect anyone. I don't know much about the healthcare system in Canada, but there are a few great online pages about EDS that may help you. Let me know if you'd like me to link them here for you.
@MsPoprouge 3 ай бұрын
Very old, I’m sure you know by now. Males and Females can both have EDS. I got it from my father, my brother has it and passed it on to at least one daughter. ❤
@jeremysargefield9434 Жыл бұрын
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.