The Girl with Holes in Her Jaw: Lymphangiomatosis | S07 E05 | Medical Documentary | All Documentary
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- Опубликовано: 26 сен 2024
- Ever since she was born, young Claire Mantey has had a strange birthmark and swelling on the left side of her face. It didn't seem so serious at first, but the swelling and discoloration persist. Claire gets many ear infections, pain in the left side of her face, and eventually, fibrous displasia that spreads from her left jawbone to some of her other bones.
People suffering from illnesses un or misdiagnosed, discuss their journey to finding a diagnosis.
Every year, millions of Americans fall prey to real-life medical mysteries ailments that go undiagnosed or misdiagnosed for years. Their lives are thrown into turmoil as medical professionals struggle to understand their baffling conditions. Mystery diagnosis tells their stories. Through interviews and dramatic recreations, each medical mystery is recounted in vivid detail. Symptoms emerge, specialists are called in, but still the daily struggle continues. And then one day, because of a patients relentless pursuit of an accurate diagnosis, or a forward thinking doctor, the problem is solved and a true diagnosis given.
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Oh hey, that’s me. I’m Claire, the girl with holes in her bones, lol. Just an update for everyone, I’m 21 years old now! The disease has since progressed since the show. I’ve had about 10 new surgeries, including removing a small portion of the left frontal lobe of my brain because the base of my skull collapsed which they then put titanium mesh in to hold the brain up. Through all of this though it caused lots of pain, surgeries, and hospital stays. I stayed in the hospital for a total of about 2 1/2 years. Had to do homeschooling online, but was still able to graduate high school with my class! I also had my left ear drum removed and filled will belly fat to stop the brain fluid that was leaking out of my left ear. I also have a shunt to prevent seizures, because there is still brain fluid leaks that they aren’t able to stop. I actually now have a daughter as well who is now 11 months old. The pregnancy with the disease went very well, although they had to do a C-section because of my disease involvement in my hips. I’m currently on pain meds and looking into another surgery because a bone under my eye kinda more toward my cheek bone has recently been becoming more thin, and causing pain possibly because a nerve of some sort being pinched from the bone disintegrating. So we are meeting with doctors in about a week to talk about a possible surgery with a plastic surgeon, ENT, oncologist, and the neurosurgeon who did my brain surgery as well. From there we will wait until they believe they have a very well thought out surgical plan. Thank you all for watching and getting the information about this disease out there! There are still tons of people that have the disease but are being treated the wrong way because of being misdiagnosed. Love to everyone watching! ❤️
-Claire 💕
•••Just an edit to say, thank you all so much for the support and love. Love you all so much. You guys are amazing. I will try to update this if anything significant happens, or if they plan to do anything to help with things other than just pain meds. Love you all. ❤️•••
Honestly it's 2019, all of us with chronic illnesses should be allowed to be cyborgs 👍🏻
Wishing you all the best for you and your daughter!
Sajaa K thank you very much ❤️ you’re so sweet ❤️
Have the tried a blood patch on the spine. You might have a CSF leak lower than your neck/head area
Lama 69 not sure if that would work, I really have no clue... it was a very long time until we were even able to find a surgeon that would touch me so they just did the things they felt most confident with doing. The shunt is working very well for me now. It’s just the bones in my face, jaw, and neck that are collapsing and fracturing causing lots of pain from pinched nerves. I’ll have to ask my doctor about that though! Thank you for the info! ☺️
I wonder how long doctors will argue that people are faking it, being sensitive, being dramatic. Nobody would be that dramatic for years, and when they have serious problems. It’s sad. I’ve been through the same thing and OMG it is exhausting. Not being taken seriously or being told it is my mind “playing tricks” on me. That my pain is just because of my psyche. My psyche was bad BECAUSE I was in so much pain. It took them 10 years to figure out that my pain was so severe that I needed heavy drugs to live a life that is not a 24 hour in bed screaming kind of life. Anyone going thru the same thing; keep on pushing, even when it is exhausting and you get severely depressed. We need to be heard, and you have to keep fighting! Stay as strong as you are capable of! You are not alone💕
I'm the same, been on and off sick for years,. Abdominal pain so bad, I've blacked out in pain, been sweating and get a temperature, my appendix got taken out in case it was that, nausea, headaches, weakness, feeling awful,.. I'll lie down and I'll be ok after a while, (minutes to hours) get up and go do something, like just go driving for a few minutes and I'll feel like I need to throw up... Then I might be grand for ages,... been to doctor's, have had people do tests, no idea what's wrong,.. I've had doctor's ask if it's just in my head (that I'm making it up or looking for attention) like no, it's disrupting my life! Why would I want this .. Newest doctors idea of what's wrong is maybe stress is causing it,.. it definitely agrevates it,.. but even now I have people who say, just take a deep breath and put it to the back of your mind and you won't be sick.. like ya! I never thought of doing that, (insert sarcasim here) it's so frustrating
@@KaityJane1995 If your problems were related to stress alone, it should be possible for you to get them under control by reducing stress, right? Since you haven't, and even have undergone surgery to get rid of the pain, I really think doctors should take you more seriously and keep investigating until they figure out how to help you. Next time a doctor tells you it's "all in your head", ask them it that's what they'd tell a close friend or relative who has the same symptoms. I really hope you find a way to get rid of the pain episodes, and soon!
@@judith8161 thanks :) I'm not currently able to get rid of the stresses, but doing my best to manage it :)
@@KaityJane1995 I'm so sorry dear there are some capable and caring Drs' out there please do keep trying.
@@sookymbo179 I went to a new doctor just 2 days ago, who told me she believed my pain and did a bunch of blood tests (it'll take 3 weeks for results) and is referring me to a rhumatologist, which could take a few months to get an appointment :) I'm so happy someone actually believed me :) I dunno what the next few weeks/ months will shows if anything, but it's so great that someone actually believes I'm in pain :)
This poor child. She has suffered her entire life. She could really use a break. The parents too. Prayers and blessings to you.
The best doctors are not the ones who know everything but the ones who involve themselfs to find the problem.
*has massive swelling on face*
Doctor: shes doing it for attention ...
What bs
TheSleepySnorlax AGREED. Some doctors are just selfish & clueless... I tell ya...
He is not a doctor. He chose medicine to make money. Majority of these docs are pretty dumb with no clinical insight.
Not to mention the FACT that ALL MOMS KNOW the different cries of their child! I could ALWAYS tell my hubby if a cry was hunger, discomfort, pain, tiredness or upset! I’m sad to know her mom was likely dismissed by Doctors for years before SOMEONE helped this sweet girl!
I LUV that she actually posted a comment to update us all! I always wonder how people are doing but even if the publish date is recent - it’s hard to know how old the vid is/was BEFORE it was shared. 😉
I wish RUclips could offer an option to allow people to verify/validate the actual/original date of real events! 👍
Tell Meg I know it always makes me wonder the same stuff whenever I see videos or shows like this. I always wonder if they in an update or anything! It would be cool if they added a check in with the patient years later. It was make when I was 9 years old & I am 22 now :) so I believe it was 2008 when it was filmed! But I believe it finally showed the year after that in 2009 or 2010 sometime! But I updated everyone for the exact reason to update people like you who care so much ❤️ thank you so so much for being so loving and supportive ☺️
A M he actually was an amazing doctor, the two doctors that were in the show with me are honestly amazing and we’re the only doctors who actually really cared and believed me and knew that I was going through a lot of pain and discomfort... he would always update us if he knew of any new treatments that way help. And if I was having complications he would have us taken to children’s right away so that he could watch me in the hospital and take care of me because he wanted to make sure no one messed anything up... because he actually had gone to tons of conferences and continues to do lots of research on the disease. But sadly moved a few years ago to a different state but was sure to inform the doctor taking his place of everything is amazing as well!!
I find these shows so interesting and makes me feel less alone, my mum was saying something was wrong my whole childhood. She was accused of factitious disorder by proxy and CPS got involved. I was always lanky. Long arms, I hit 5'8" when I was 12ish. I was having a lot of muscle spasms and at first they suspected I may have had a neuromuscular disorder. When they found I didn't, I had no follow up. Then I started getting large heamatomas and I started dislocating joints as soon as I hit puberty, small movements would cause severe dislocations. Eventually my mum put her foot down and took me to a large children's hospital. The rheumatologist immediately realised I had blue sclera, long fingers and toes, velvet soft skin, skin elasticity and I walked out of that appointment with answers. I have a progressive connective tissue disorder and associated comorbidities. I am 22 now and live in care. It's been a hard trot, but I really appreciate my mum being my fiercest advocate.
M . . .. .
Ehlers-Danlos?
I read Claire’s update. I wish you all the best Claire. You are so young to be dealing with all these issues.
Moe Wilson thank you so much, that truly means a lot. All the love and support really makes me smile and feel very cared about and loved.❤️ thank you again!!
I can’t believe it took so long for them to do a full body scan Claire. You really shouldn’t of suffered and feel it was the case as you was a child.
Jemma Louise111 Thank you so much... yeah my parents always wondered the same thing and always pushed to doing more scans but the doctors always kept saying I didn’t need it and it had nothing to do with my bones... at least that’s what they kept saying until I was old enough to speak for myself in my pain.. but j really appreciate your love and support it truly means a lot ❤️
"oh there is a mark on the jaw. and when stuff happens, that area swells and gets colored. surely nothing to do with the real issue"
ehh, if there is a health problem and something that is obviously not ordinary, check that.
Same with the second case. "felt like rock in the shoe", but nothing inside the shoe? perhaps check the foot then, the "rock" might be there. And then work yourself up along the pathway towards the brain. If it isn't in the foot, and isn't in the knee, and not along the bones in the leg, the next stop is the pelvis area.
It happens because doctors are medically trained by the term " when you hear hoofbeats think horses not zebras." This is for them to diagnose simply for years and never take the time to do a more invasive search for the issues and symptoms at hand. I understand how that can work for some patients but as someone that now lives with multiple chronic illnesses, I was brushed off the same way over 10 years ago and told that they would never figure out what was wrong with me. Finally someone saw that I was in fact a zebra and simple blood tests held all of my answers....... the way medicine is practiced needs to change.
Zebra gang
Agreed. Same here. It''s a much overly used adage that only works if you know what a zebra is. Otherwise you just think it's a stripy horse.
Could you please put up all the episodes of Mystery Diagnosis ?
I find it so creepy that they get the actual parents to reenact the scenes with child actors
They getting paid that's why
Why creepy
@@onslaabidi5254 Well I don't know about you, but a regular person, not an actor, cradling a child they probably just met, pretending it was their real life sick child, is a little bit creepy to me.
I'm so glad I'm not the only one who thinks the same 😂
THESE cases are true and real so they seem to be creepy and WHO else to narrate iF not the real parents and patients themselvez
I'm so sorry that this young woman has suffered for so long and I know as a parent how helpless her parents must have felt . I wish you all the best Claire 😚
Mississippi Mud thank you so much, that truly means a lot. But yes my parents for sure went through a lot... but I can honestly say that without my moms hard work and dedication to researching my pain and my problems in order to find answers because no matter how many doctors we went to they never had answers until my mom finally found an amazing doctor and we were referred to the doctors in the video and those doctors truly researched my disease soooo much before doing anything and actually started studying the disease so much that they actually have multiple patients with the disease that they have diagnosed! My parents and those doctors are seriously my saviors but my main savior was my mom... I love her with all of my heart!! ❤️ but again thank you so much ❤️❤️☺️☺️
“They’re growing pains!” 🙄 That was what everything was chalked up to when I was a kid.
And yet for those of us with kids having actual growing pains, suddenly growing pains don't exist. Hmm
bellajaid yep! That’s true too. Ridiculous.
my boyfriend has meds- he was told the same thing till he was 18 and finally diagnosed :/
It would be so nice to be heard and they rule stuff out before basically telling us it's all in our/their heads.
Yep i have had MS since I was 14 only diagnosed this year I'm 21! Was told it's only growing pains deal with it! It's disgusting I hate doctors x
I am so freaking eraged by the second case. The woman choses FOR YEARS not to tell her family, yet her family is oblivious to years of pain?
And then, she chooses NOT to tell her grown up kids that she has a tumor?! So that her kids - if they have a health problem - to have an example of not tellng anyone that they're sick?
Eraged.
Um sorry but is it enraged?
What is erage?
My son is off to France to study for a year. If I got diagnosed with something bad I wouldn't tell him.
Andreea Roman, @ approx 30:18, you will hear a crucial sentence that you definitely missed, and now not only is your blood pressure up, but you come off as a fool who doesn't listen or doesn't comprehend a simple television show. Chill you will live longer. Cheers
Andreea Roman The family knew she was in pain, but she got used to it and did not talk much about it. About the tumor, I think she wanted to wait until after the surgery to tell her children, since she would not know if it was cancer or benign until then. Why make the children worry about cancer for serveral weeks if, at the end of the day, it is not cancer after all.
My friend had a similar tumor to Sue, she also got it removed however it took years to diagnose it too, as there was only one doctor in the UK that actually could diagnose it.
Bursitis. I have it in my shoulder and hips. It can get painful and drives me nuts sometimes. Cortisone injections do great when they work.
I like watching medical discoveries . We are educated with these discoveries .
Today on "How It's Made": Emotional pain within families!
I just spent 5 years with terrible pain in my hip. Doc told me it was age, bursitis, lack of exercise etc. I just had surgery due to my toes turning black, during surgery they found I had almost no blood flow to my hip due to a blockage in an artery. Surgeon asked how did I walk into the hospital? 4 doctors and 5 years of pain. And like magic my hip is now perfect one week post surgery.
What an awful thing for a little girl and her family to go through. My heart goes out to you Claire. I hope you’re still doing okay honey. Much love x
Stop👏
With👏
The👏
Damn👏
Eye close-ups👏
It👏
Don’t👏
Make👏
It👏
More👏
DRAMATIC👏🤭
Clapping doesn’t make it more dramatic either
RandomslimeAnd MoreThings I’m resorting to clapping THAT’S how much it annoys me
Shut up already you freaking annoying losers! Watch the show and learn a thing or two instead of keep commenting about eye blinks, if you guys are way too stupid to only focus on eye blinks then stop freaking watching the show.
Just watch and learn. IT is free education
Then 👏
What's 👏
The 👏
Point 👏
Of 👏
This 👏
Drinking 👏
Game 👏
? 👏
STOOOOOOOOOOOOOOOOP THE SLOW BLINKING
Yeah, what is with the eye closeups and blinking? Is that the director’s attempt to increase the drama? So annoying.
No one:
Mystery Diagnosis: 👱🏻♀️ 👁
If you only pay attention to the eye blinking your too dumb to be watching this.
@@aaa-vx8ke Strange Words Coming From Someone Who Can't Even Spell "You're".
I hope that you get to achieve all of your dreams that you want to achieve in life Claire I will be praying for you that you live as long as you can
Stacy Lunsford Lunsford thank you so much ❤️ means so much ❤️
Oh yeah Doc it is perfectly normal for a 30 something lady to not be able to SIT DOWN without massive spikes of pain. With this sort of attitude and dismissal of concerns as well as total misdiagnosis due to lack of care being fairly commonplace can we really be surprised people are anti vax and anti science? I mean with this response to a tumor that one cant tell is benign or not w/o biopsy can you really blame people for falling for miracle cures for cancer and such? And it certainly doesnt help that the gov is now determining what care is ok instead of doctors and of course the insurance companies are the main criminal in all this
Just can’t believe that some doctors can’t find unknown illness I’m glad they find their unknown illness ♥️
Don't those stories usually end with "everything is okay" or atleast "kind of okay" now? >.< The first one is so sad. I mean the doctors said she could literally just.. die. D:
claire came back a month ago and commented on this very video as an update!!
boy ...90s docters lack of concern is annoying to watch
Isuchy quaich it’s no different today
Edgar Allan Poe's The Black Cat it really is
Nobody Knows it’s not overly dramatic at all... it’s true... it’s exactly what happened... not overly dramatic at all... if you had been there and been part of it you would’ve understood how truly terrifying and horrible it was to get misdiagnosed and treated as though they didn’t want to help you...
Nobody Knows I feel like they have to make it dramatic for the viewers because we couldn’t ever understand what these people went through
It’s still like this, depending upon what dr you get. My dr gives me tests when I complain of problems, of course the tests are not always the right ones. I’m in Canada, so those tests are free. Our taxes pay for Medicare.
Hey the guy doctor didnt fully blink
The best of luck to you Claire. You have a resounding amount of energy and willpower that is amazing. Take care in these troubled times.
PARENTS!! If there is something wrong with you, YOU NEED TO TELL YOUR KIDS.
Molly Brooks wait how do you tell a 3 year old your going to die
@@aaa-vx8ke If You Don't Know Then You're Obviously As Dumb As All The People You've Called Dumb Combined.
My mom always kept me aware of everything that was going on, she did such an amazing job of keeping me aware. She actually had her major in psychology so honestly that’s really what helped her to be able to explain things in a way that I wouldn’t panic or freak out and always kept me motivated to fight and stay strong and positive through it all. My mom did an amazing job ❤️❤️ & still does to this day!!
I had large tumors on both sciatic nerves it took 7 1/2 hours to remove one tumor. I have neurofibromtosis too. What was rare was having both sciatic nerves involved with tumors.
Doctors need to learn to listen to mothers...
Sandy Grogg I agree!!! 100%
I wouldn't say 100% of the time, but they should definitely take their opinions into account
Agreed
YES
May God bless both of them!
The Kawaiiloverosegamer ❤️ thank you
mistake number one, they took their baby to a family physician instead of a pediatrician.
Edit: if you know that something is wrong with you or your child, don't stop searching till you get answers. I had mono at 4. after it cleared up, I got a brain infection that caused my brain to swell and cut off blood supply to my optic nerve causing optical neuritis in my left eye, causing me to be permanently blind in my left eye. i can see out of it, but it is darker and fuzzy. my mom took me all over but doctors always said my symptoms were from the mono. i would fall over and couldn't get back up. my depth perception was also off. finally my mom took me to Mckenna Hospital. they took one look at me and sent me back to a room for tests instantly. they are the reason I'm even alive.
Nero Hunt that’s exactly what my mom did as well, she did everything she could. They just kept saying it was an ear infections because when I was little I would get them very easily so that’s just what they thought. Also my mom took my to multiple doctors. Not just the family physician. My mom did not make any mistakes at all. She did everything and anything she could. It’s such a rare disease they could not tell what was wrong especially since I was so young and would just complain of my ear hurting because that’s all I knew how to complain of because I didn’t know what was going on and neither did my mom nor the doctors. Very professional doctors misdiagnosed me. It was nothing to do with what my mother did wrong. She is the one who saved me and never gave up on me. I’m here today because of my mother dedication. ❤️
Sometimes I forget that these aren't fictional
After My Chemotherapy all I heard from Doctors for Half a Year was, "Don't worry, It happens, give it about 6 months and the pain will go!!!"
I went when it was just my toes, then ny whole foot, then half my leg and still... "It gets worse beffore it gets better!!"
Then I couldn't walk and 1 week in the hospital to, "We're sorry... All your Peripheral nerves were damaged by chemo.. You can walk, just will be in massive pains... Here,,, take these massive pain meds and have a fabulous life!!!"
Nobody:
This documentary: 👁 👁
Naia Meyers No one:
Mystery Diagnosis: 👱🏻♀️ 👁
I feel so sorry for this selfless lady and her years of suffering. If a patient is difficult to diagnose why is a catscan that may or may not reveal the problem not ordered sooner... dr's should really listen to patients and take them seriously. Not necessarily being emotionally involved, but caring enough to try and get to the correct diagnosis. Ibuprofen or panadol is somehow insulting. Maybe pretend your patient is a family member.....I'm sure many become doctors for all the wrong reasons.
Poor kid....get more than one doctor to look at something always.
Can y’all stop the brightness up & down? I want to watch but can’t because of my epilepsy. Please. As a medical documentary that’s off to me that the constant up & down is included on top of no warning.
The Makeup Game LLC
i... didnt think of tha.
*ThaT’s irOniC
My seizure tiks started when I was watching:(
I would like to think a dentist would have noticed the bones in her jaw when he did his annual panoramic x-ray on her mouth. I don't understand how that could happen!
Carrie Beckett they did notice and that’s actually also what caused some concern but then we asked the dentist and he just said oh yeah it’s probably just because you don’t have many teeth on the left side. He really showed no concern. But my mom still told all the specialists that as well. Most dentists actually refused to see me... in order for me to get braces we had to travel 2 hours away, just to find an orthodontist that would even put braces on me.. and still to this day have to see the same doctor for any dental needs.
@@claire1159
I am so sorry you (and your family) had to go through what you did before you got a diagnosis. I am so amazed by your positivity. Regardless of whatever this disease throws at you, you keep throwing back with your attitude. I bet you are an amazing mother because you are an extraordinary person!
When I was in college I worked at a dental office as an dental assistant. The doctor I worked with would have pointed out ANY anomalies that were there. He had pointed out worrisome things to several of his patients and it turned out to be cancer. That's what prompted me to make that comment.
@@claire1159 Hmm, I can understand the dentists, they're probably worried that braces might hurt more than they help. They do put on a lot of pressure after all
took me 4 years to be diagnosed with CRPS, and it was both devastating and validating, I cannot imagine going 13 years not knowing, jfc.
"I would literally jump out of my skin..."
People need to learn what the word "literally" means.
ENG 101 "How to English Without Being A Literal Fool"
Yes, literally. Cheers!
I scroll through the comments and the exact second she says it i read this.. What a coincidence!
dear editor team:
Please add some more flashes to your videos, because its absolutely sooo not annoying! I am planning my next party and for that i would need a strobe light. i consider to use your videos for that, since its even better due to all the colours as well
PhonyPhoner these videos were filmed years ago so they can’t change it🤷🏻♀️ i know it’s annoying but we can’t do nothing about it
Don't watch?
PhonyPhoner this was filmed back in 2007... so there isn’t anything they can do to change it now so, sorry? They can’t go back and change anything considering this show doesn’t even make new episodes or anything anymore. So I’m sorry that you don’t like it but there is nothing anyone can do about it. Not even this page can change it because it’s legally not even their video.. but I for sure do appreciate them putting it on RUclips so that more people are made aware of the diseases. That’s what the purpose of this show is, is to get information about rare diseases out there in case anyone is having the same symptoms or complications and is misdiagnosed and looking for something to help them find the truth. This shows really is know you of helped a lot of people and get the word out about a lot of rare diseases that a lot of people don’t pay attention to because you can’t really physically see the disease on the outside... so that’s why it’s so easy to be just judge my doctors or doctors. But anyways sorry... they can’t change anything about this video...
Do you know what is more annoying than the dramatic eye blinking? IT IS YOUR COMMENTS ! Like ok we get it you are annoyed but don’t make it a big deal just ignore it !!!
your comment only adds to the problem haha
AHEM( *hypocrite* )
No one:
Mystery Diagnosis: 👱🏻♀️ 👁
😂😂😂
does sue's friend eyes in a different colour? like the right one is hazel and left is like blue or gray?
It's a rare genetic "bug" where your brown eye gene which is usually stronger that the blue/light eye one is the same "strength". Your genes gets a bit mixed up then and the eyes are of two colors. Its more common with blue/light genes where it just "can't pick" blue or green or Grey and the two irises aren't the same color. I can't remember the name tho, but it has a name
By the way, it's just affecting the color, nothing else
Heterochromia if I remember correctly
Ciara Scalan It must be really pretty. I feel like you’re lucky!
There was a girl I went to school with who had one dark brown eye and one light brown eye
My orthopedist said “it’s part of getting older” when I was 29 😆 Such BS. Anything but admit that I might still be experiencing issues from Lyme disease post treatment.
pitiful misdiagnosis
Hope you get better with time & heal 🙂
Claire you are amazing ❤️
Aww I feel so bad.. when I was born I was a preemie and I nearly died at birth I have asthma and a dezise called tricklomaina or something like that it's where I pick and pull my skin...it's really hard to stop...it comes and when it goes it will come back but worse....and I get made Fun of at school the kids say"your bald I'm gonna take your hat off and fight you" the teacher's don't care tho...they probably make fun of me I wouldn't be surprised if they did..
Yes, the world is cruel. Don't worry about what people say or think. Pray and look to our Creator. He cares for us and loves us.
Trichotillomania. I have dermatillomania which involves picking at the skin so I feel you. Mania buddies 4 lyf! ❤
Claire, I Think You Are Amazing 🌜🌻🌛
May Your True Strength Of Spirit Carry You Forward Every Day Of Your Remarkable Life 🌼 ✨💫
Nanette has such beautiful eyes. Like, that is so cool.
Sue's friends eyes .... The only slow motion eye close up I look forward too.
Jayson Lee 😂😂😂
Claire you are amazing beautiful courageous brave thankyou for sharing your story I am praying for you for Gods healing your family also 🧡
Come on Claire! You will get out of all this!❤❤
Did any of these doctors get sued? What about the one who told her its old age pain... when its a tumor
It's so hard when you have a baby who is sick or in pain and there are no visible signs and the doctors just tell you to keep them hydrated and let them know if the symptoms get worse. I had a preemie, who then had colic. It was awful. I don't know how we survived the first year.
I was a preemie. Lots of ear/sinus infections, ear tubes, etc. I was 1.7oz., 10in long.
Awh... prayers....
Claire,you are a great Lady!😊😊
It might be “challenging” to think of the sciatic nerve but any dumbass MD can order a scan! I’ve had *all* the scans & never a tumour but at least they looked! I’m Australian & we have “universal health cover” (which doesn’t cover everything as the term suggests) so that may be the difference. Not sending a patient for an expensive test they may not need is only helpful up to a point. Once you’re looking at someone with *years* of pain, you should at least recommend it & let the patient decide. It took me 20yrs to find the doctors who took my pain seriously (the scans didn’t show tumours but they did confirm diagnosis)
I know how annoying is it. Im aussie too how shit is their health care over there. Greatest country in the world yeah right
Yeah. My country has it financed through our government and I think I’ve had like 10 MRs, some X-rays, CT, been too several specialists. If it wasn’t included in our taxes (they vary with your income, you get free health care, schools etc even though you earn 10 dollars a year) I would never have had the finances to do them. Being sick makes you immobile, and on top of not being able to work it already puts you in an hard position And it doesn’t end well for those who can’t afford to get help.
So many of the cases covered by this program seem to have doctors that don't take up preliminary flags and/or do further straightforward investigations. To me, that means the training of US doctors is not particularly good. Ot may go back to patients having to pay ridiculously high costs for tests, or it could be a serious fault in training.
Trish Wade Or maybe there are thousands of great doctors and the only ones you see on these shows are the bad ones? Just a guess.
I have neurofibromatosis I started having issues when I was only a baby but my case for worst in a wheelchair and internal tumours. hope they test her daughters because they can inherit the condition like i did
Jeez, what a problem. Time for another opinion. When the doctor say "I don't know", it's time tor a different opinion
I wonder if medical marijuana/edibles would help now a days with the pain.
they do!
I'm now on medical marijuana and I've been able to slowly reduce the amount of opiates I've been on for over 2 thirds of my life.
Could Claire get prosthetic bone implants? Especially for the half of the mandible that’s so affected
Edlar89 they may think of plating the bones, my sons thigh bones may end up being plated. Especially because they are dangerous to break. He’s not suppose to do any activity! Yet, he wasn’t diagnosed until he was over 16 and had never broken a bone.
She posted on this thread somewhere farther up. Said they were using mesh and things to try and replace some of the bone loss.
would bone marrow treatments possibly help built new cells to halt or slow the progress?
I feel so bad
my boyfriend was feeling a strange pain in his abdomen. On the same day he went through all kind of tests and the scan. How do these doctors not use the scan?
This is a question not a comment isn't there a stem cell treatment to boost the immune system?
My son has an even rarer form of this disease of Claire! He didn’t grow for years, doctors ignored me! He’s 18 and only known about it for 1.5 years! He also still had most of his baby teeth! He’s never broken a bone, but it is in his thorn bones! Huge chunks missing
Bless you and your son's hearts!!
Praying for your son. He’s a fighter for sure. ❤️
Humans have "thorn bones"? Sweet, so we're like roses or something.
Simi
noice
Thigh bones?
Half of our life is just gone battling with an unknown disease . Sad !
You are an amazing wonderful person all the best for your healing and family life..look at louise Hay videos... ..much love
I hope in both these cases that the people involved took some sort of action on the prior Drs. They are incompetent and should be reprimanded before they do anymore damage. Ive come across this in my own life. That look of what do you know and stop making a fuss. Also I noticed that a certain husband did not show up. I am wondering if he thought she was also must making a fuss.
what are these deafening crying dog noises???
Exactly i dont complain, but when i do i talk down how bad things are. I learnt if something is not right say its not right! Dont do what i did and think you might be bothering them over nothing.
thats a.. w-hole lotta holes
Nobody bothers about the blink anymore...
to this day, I still don't know where or when they blink that annoys others so much. I don't even know where the blinking part is.
N337av G#o5h same!
@@neelav2394 There's usually this dramatic sound at the same time. Like here: 22:28 , but he didn't do a proper blink.
It's not bad in this episode, it was really bad in the episode with the girl who got her period at age 3.
I've knd of gotten used to the blinking. Maybe people have realised it's not a new series, it's all pre-recorded.
@@jamiececilielange5249 thank you for pointing that out for me! I still don't really feel brother by such dramatizations though.... It's a show/documentary for the general audience after all!
sorry but you guys sound like my teacher trying to have a normal convo w my classmates 🤣 heres an apple 🍎
Well Claire grew up to a girl posting pictures of herself with deer blood on her face, her Twitter sure is a rollercoaster ride
Kemikaze K I hardly even go on Twitter 😂
Lololol where's this Twitter?
who cares. let her enjoy things.
running is terrible for your knees
30:09, is this woman someone with heterochromia? (two different eye colors)
I noticed that too! One blue and one brown, super pretty honestly
I have a rare form of heterochromia. One gray eye and one gray hazel so it often looks like I have one gray and one green
A girl I went to school with had one dark brown eye and one light brown eye
'I think a bit of my wife died that day.' *funky music plays*
You think with my family history they made me stay in the hospital
The Black Ops 2 starting sound is used very often
You can't keep going to different doctors in the UK like you can in the US.
@Nati At 4:30 NHS
Babies are rarely pretty straight after birth but clare is scrumptious.
Nerofibroma? sounds like she may have very mild neurofibromatosis
The pills are always light pink long lozenges.
Stock footage
Just one question WHY?
Beverly Kennedy why what?
Claire Bear why what? Well the Bible says not to question. But I still have to ask. Why . ?it seems to be cruel to make someone suffer like this girl does . That’s the reason for the why?
Maybe it was an infection with bacterias, who destroys the bones from claire!
Hernia is a clinical diagnosis 🤨
That ubisoft sound on 6:00 hahaha
x sounded familiar
x wait what?? What does that mean?
@@claire1159 it's a sound from the Assassin's creed videogame made by Ubisoft
Sue reminds me of Mrs Doubtfire lol
*Sniffs...*
I smell...
LAWSUITS
Lady, why took you so long to see a doctor? After WEEKS of pain? than waited again.. A CT scan from the very begging. One don't have to wait for years to go for a CT or a bone doctor at least. I am so very sorry for your big trouble, but you kind of did it to yourself...
Claire talks like a robot lmao
check her twitter tho lmfao
M. M. .
University of Washington is the best!
42:54 😘😘😘
No one:
Mystery Diagnosis: 👱🏻♀️ 👁
BlueBae you comment this everywhere just stop
I got the 5th like yass
Weird flex..... but ..... ok
Ryan - where is his neck???
Proud Zionist grow up.
Claire Mantey
STOP TELLING PPL TO GROW UP i cant u idiot 😠
oooh its all bout u now.
yes u gone through a lot BUT your not my mam
Random Ruffel you’re so immature.
Everyone in the comments need to chill 😂😂😂