The Girl With No Bowel: Hermansky-Pudlak Syndrome | S09 E05 | Medical Documentary | All Documentary
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- Опубликовано: 15 июн 2024
- Karen was born with both albinism and blindness but is now suffering with another condition called Crohn's disease. This disease gives the doctors no choice but to remove her lower intestine and Karen must now use a ostomy bag for the rest of her life. After the surgery to remove her intestine, Karen starts to feel much better but a few years on, she receives news that she has now been diagnosed with a rare genetic disorder called Hermansky-Pudlak Syndrome (HPS), which her cousin also suffers with too.
People suffering from illnesses un or misdiagnosed, discuss their journey to finding a diagnosis.
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0:00 Introduction
1:48 Karen Tickle
11:20 Tommy Tillman Karen's Husband
21:46 Tommy Karen's Husband
31:26 Dolores Pastie Pam's Friend
For those of you who wanted to know, I just Facebook searched Karen and she’s still with us another 11 years later! By the looks of things too she’s still not on oxygen! :)
And Holly got married! :)
As of October 2019, she is on oxygen and is waiting for a lung transplant
Lisa Abroad h how do you know this?
@@ismahan391 From a RUclips video she posted with an update.
@@lisaabroad1192 oh! Do you remember the name of the video?
I’ve noticed in these episodes that no one ever calls an ambulance. Why is that? In the U.K. our ambulance crews can get on site tremendously quickly and can give treatment which is quicker than driving yourself!
Ambulances arent that fast everywhere.
American health care is shit
The cheapest ambulance in the states is around 1000 dollars for a ride
It costs loads in the US. Also, in the UK, hospitals tend to be closer because we are a smaller place. Its often quicker just to drive in the US
@@xPaulinhaKawaii Oh what!? Our ambulances are free!!! (in Australia)
after watching this show for a while, you get used to the dramatic blinking lol
No
Someone call Central Casting, we need more dramatic blinkers
@@deadsi *blink*
was that dramatic enough?
@@LunaMaheswari YOU GOT THE JOB!
Shut up
Her parents are amazing... She also has a very devoted husband and very beautiful daughter... She is indeed a blessed woman
She sure is! My partner left me when I got sick. It does make things a lot harder without the emotional support.
Saskia Grace aw :( stay strong I hope you feel better
@@morganismism thank you! 🌸🌸
Saskia Grace I hope you found/find a a new man or woman (if your into that) to take care of you :).
@@morganismism thank you 🌸 no I'm still alone. I think perhaps it's too hard for people to enter a relationship with really sick people and all that comes with it. It's a huge weight physically, emotionally and financially. Plus I don't really meet people as I'm home all the time. I do get very lonely and miss sharing the ups and downs with someone but also feel I can't ask that of anyone when I have so little to give. I've come to accept it over time but it still makes me a little sad.
The only Karen we like and support
Hope she’s doing well
Hahahah😂
those dramatic eyes clossing effect got me crazy... euuuug
Maybe because Albino people have trouble with the light that comes to their eyes….I don't think she does it on purpase, just a reaction to the light :)
@@sandokan1956 no it's not just her it's the editing they did the same thing with other people in a different video 😃
Omg yes it triggers me so much for some reason
M Vivid they do that in every single freakin video lol
@@sandokan1956 actually... it's not... the series makes the people dramatically blink... like a scene
and I thought period cramps are bad
Queen Purple I feel like I need 4 units of blood after that and all
They can be for so many girls.
I get abnormally painful cramps and I've nearly passed out because of them.
They are loo
I sometimes pass out my cramps are so painful but I'm used to it now
cut down ice and spicy food . the period pain will cure.
Watching this made my body feel weird
Same
Omg same my arms started too feel weak
SAAAMMMEEEEEE 😂😂😂😂
I watch these videos and my throat feels like it's blocked.
My legs goo weird
Karen is so sweet. She’s wonderful.
My heart melted watching Karen go through so much it's so amazing she survived! She's so brave! I love her face when she's nine 😊
I agree. I just thought she had the most kindest eyes. Die all the suffering she went through she has a special gift, she probably not even is aware of.
@@sportypawsltd9515 😊
Karen is such a lovely soul
It's scary to think of the amount of things that can go wrong in the human body.
Whats up with all the eye closing and opening lol
Maybe because Albino people have trouble with the light that comes to their eyes….I don't think she does it on purpase, just a reaction to the light :)
IKR
@@sandokan1956 you literally copy and pasted that text and just answer it to every one of this kinda comments😂
@@sandokan1956 I was not talking about that dude 😂😂😂 did you even watch the video? The amount of shots focusing on the eyes closing or opening, on every single person in the video, is nothing short of annoying and distracting
@@machimochiisintown every video they do the eye pausing in nearly every scene 👀😑😂
What a remarkable woman, Karen is. Even though she's had bad health most of her life, she is genuinely happy and has a loving caring family. Her dad is a diamond.
Okay but Karen’s dad... I wanna hug him, like he seems like a great hugger
I agree! They all seem such nice people. Just people that you know will never judge you.
these people have DEBS
Dramatic
Eye
Blinking
Syndrome
True
Her disease is called DEBS
Krump
baby-got-back
no the camera men have EF
Eye
Fetish
or...
as i say
Extreme
F*ery
🤣🤣🤣
I feel for Karen. I also had my colon removed due to ulcerative colitis. I also have lung issues which aren’t related. It must be awful then discovering you have another disease after thinking you have Crones.HPS sounds serious and I hope she’s still going strong. She sound like an incrediblle person with a heart of gold.💛 and a loving family.
*She is sooo pretty inside and out!*
Ikr shes strong to
Maybe not inside...
Please stop that eye closing drama that hurt my eyes
Maybe because Albino people have trouble with the light that comes to their eyes….I don't think she does it on purpase, just a reaction to the light :)
@@sandokan1956 a prev comment said that you are copy and pasting this on every comment that mentions the eye opening and closing thing and wow, they weren't lying
@@machimochiisintown pretty sad haha. Bored much?
Saying that won't help now, this was filmed like 10 years ago!
Ling 09 ikr
I really find Karen very kind and I am very happy that she can still enjoy her life with her daughter and husband and she still staying strong.
Also happy that Sam has got her diagnosis and still be able to live her life like she want to. Stay strong Sam.
Thanks for sharing this video 😉
Sweet couple. Bless them both such a wonderful example of a loving supportive relationship. May the Lord bless and comfort them, may the Lord lift His face to shine upon them and grant them peace.
Please stop talking about the "dramatic blinking" and enjoy the video!!!🤦
I'm late but... SAY 👏IT 👏LOUDER 👏PLEASE👏
THIS
I read these comments about the blinking, and as a person who have watched many of these documents, I can promise you - one learns how to ignore it. I haven't even noticed the dramatic blinking.
I just read the comments when it happens 😂
Yeah me too I didn't notice it until I came to the comments just ignore it and try to get as much information you can from the video
I don't even want to know what they're on about and I don't want to know as its irrelevant and distracting as so many ppl so intelligent to comment on the perriferal of the video making than to comment sensibly about the story itself.
If I could blink these ppl out I would.
Why some people wait weeks to go to a doctor. An Ibuprofen doesn‘t make it better if you have the problem for weeks.... 🤦🏻♀️
But on the other hand Karen should be an inspiration for everybody!
What a beautiful woman inside and out, you triumphed, bless you Karen.
I suffer from Crohn's and I'm so thankful these days there are more options for medicine.
Eyeclosing in 1..2...3...galore...
Kenneth what is this...why! I’ve just seen this recently.. plus the whooshing and thudding noises..
APRIL APRIL overdramatized! The editor really want it in his cut scenes or he gets fired... in all theire movies its embedded.
3
"I was very relieved to have a label".... This really resonates with me as my daughter (now 3) was born with a rare chromosome deletion including IGF1-R. She wasn't growing well "failure to thrive" and was below the 0.01th centile at 8 months old. She had so many tests in her first months of life. We finally got the diagnosis at 9 months and suddenly we knew what was wrong and what we could do to manage her condition. She is the only one diagnosed with this in my country so targeted healthcare is a little difficult to access. Luckily she had very few other symptoms of the deletion and is now doing well, in fact she is too big (just over 3rd centile) to get growth hormone funded.
Poor Karen :( I hope she’s doing well
She is beating the odds and still alive to this day.
Such a lovely human. Good luck with everything Karen. You are quite wonderful. Xxxx
She is doing great now, she got her new lungs March 2020, and is now out of hospital and doing well.
@@bigboredthing Wonderful to hear. ❤️❤️❤️❤️
I loved now the dramatic blinking lol i even blink with them.
😂😂
I'm 40 now and I have had Crohns since I was 12. My sister had it as well since she was 7. I'm terminally ill because of complications. One complication is having clots but also life threatening bleeds. I can relate to this story. I only have 1 metre of bowel left.
I hope you're as well as you can be right now and are comfortable. Sending a virtual hug if that's OK? (. HUUUUUUUUUUG!!)
Omg I feel so bad for u. I hope you are ok and will get better soon 😘😘😁😁😁😁
@@apocalypsis605 thank you for your kind words. There are no further treatments for me and I've made the decision to put not to be resuscitated on my medical notes. I'm okay with it as I'm a Christian and I know a better life is waiting for me. I don't really have any quality of life and I'm deteriorating every day. I choose to be happy and positive, I like to focus on what I can do rather than what I can't. I don't see dying as a negative thing. I hope all is well with you. Xx
@@peterbeadman9010 thank you so much for that hug. I'm sending you one back. I don't get many hugs and I really feel so happy when I'm hugged. Your message meant a lot to me because you showed a lot of understanding that I'm not going to be getting better so you showed caring by saying that you hope I am as good as I can be right now. I really appreciate that. I hope that all is well with you and your family. Its a real talent to show empathy, real understanding and then being able to communicate that to a stranger so thank you for sharing that with me. You are a special person. Xx
Amy Rivers I hope they come up with a cure of some kind but I don’t really like my life too much because I always feel sick because I’m always worrying about stupid things but I’m sure it doesn’t compare to something like that 😁😁😘😘
Karen is just such an amazing woman! Both she and her family are just such lovely people and I wish I knew them in real life! There’s just something about them, they’re so loving and genuine, the kind of people I could just sit and chat with for hours over some tea and home baked treats... I truly hope Karen is doing well today and that she and her family are staying safe through these crazy times!
Watching this while on the toilet made me uncomfortable
Pam's story is so inspiring! Thanks for sharing.
These documentaries make me very grateful for my organs🙏
There is a myth that in the UK healthcare and ambulances are free. It is not so. In the UK employers and employees pay national insurance. The amount paid is in line with the amount earned. The more earned the more paid by both employer and employee. . That money is then shared out between everyone in need. No one is descriminated against on grounds of income. If you have millions or nothing in the bank you are treated the same way if you go to an NHS hospital with no favours.
The Albino lady with HSP, what a beautiful soul and his wonderful husband who stands by her. My hat is off to you! Lovely people. Very touching and uplifting.
Such a blessed woman for having such wonderful and supportive husband all throughout, and a wonderful daughter blessed their family.
"it was awesome not to be sick"
What a brave girl, what a brave woman. When she is fighting the tears, I did too. What a great human being. I wish her the best! 🌸
Karen’s husband, what a great guy! I have an ileostomy. I am so glad I had already been with my life partner for 4 years before it happened. He had already fallen in love. I don’t know how I would have had the courage to date. I’ve had a colostomy at the age of 15, which had been reversed a year later, and I vividly remember the insecurities and self-loathing as a teenager with a baggie during that period.
I like medical documentries of this type keep it up you guys are doing great job
The 1st story was so sad but I’m so happy she’s alive x dose anyone know anymore update on the folks?
Her father died in 2016 aged 90 and is lived on in his children, 8 grandchildren, 3 great grandchildren and 2 great-great step grandchildren. Karen is still alive to this day, thanking god for the blessing of beating the odds. I could not source any information on her mother though.
People commenting about how the channel name is spelled wrong... umm it's supposed to be like that... it's... it's word play.. like when you reel in fish.. except reeling the news... and its also real news
Is that France in the profile picture?
@@blackrose584 yupp
It's about the tapes they used to used to record I think. They were reels.
wow! SHE IS BRAVE . She has always been ....I mean she was a brave girl eventhough her childhood was not good.I really hopes she lives her life to the fullest.
That first lady was so courageous in the face of her terrible condition and makes my odd aches and pain I endure seem so trivial.
The cousin who called her is a hero
I have had my first period today and was so scared it looked terrifying and now I'm having cramps😞. I don't know why I wanted to watch this video it's making me feel sick and my cramps feel more painful🤦
You'll be fine, the first period usually is the worst hun x
@@beyondhelp666 thank you Xx❤️
Hands up for late bloomers, I’m 16 and no period!!! I’m fine with it
@@sophieread2028 I wish I was too but it visited as earlly as 11. And mom was not around.... 😧
Anyways about the cramps lay down and put your feets up and hot compress your lower belly. And avoid salty and acidic food before and during your period. That might help....
@@sophieread2028 I'd suggest getting an abdominal screening just to double check
Karen is not your typical Karen. She's a beautiful person
ikr😍😍

Celebrating Leaders and Innovators in the Social Sector - 2021 Classy Awards
right
Why am I watching this while I have a stomach ache?
3mer4ld_mooon 4 sameeee lol
I ended up reading every single comment
Crazy Dingle Girls and who cares you just wasted your time
@@murtazarizvi8002 apparently the 49 people who liked this comment cared
Randominations eh well you know i have bad fucking jokes lmao
Sameeee
SAME!
I feel weird now my stomach hurts and my heart is heating up 😳
Maybe you are an empath like myself.
at least u don't black out or nearly black out everyday like me. i have low blood pressure well that's what the doctors said i have 🥴. runs in my family though cause my mum has low blood pressure but less worse than me.
@@xumie_1752 actually i do i have iron definitely and i get super dizzy
Karen has such a lovely golden blonde hair colour :)
She probably dyes it but I agree it looks nice
Bring more of this series
Please?????. Manners maketh the man
She is an angel among us , she gives love in exchange of all her pain
Just a tip, if you've lost a lot of blood or are losing blood never take a hot shower or bath, you will definitely pass out
Each doctor will only diagnose under their own speciality and going to so many different ones will not get the whole picture. Frustrating to say the least.
I love how her name is Karen though
What a beautiful story about Karen and her family. You feel blessed about your own shortcomings
She's still alive 😁😁
Thanks
Why are her glasses upside down
It was a style back then 😉
@@venisek09 are u serious ?!!! 😂😂😂
Tari Inengite yeah
...I hope shes OK :(...She still Was brave...Which i find is an very rare thing to have when you have a medical condition and she is now a role model of bravery to me.
"...that I might have Lupus" me screaming at my screen: ITS NEVER LUPUS!
May god bless you and your family stay blessed and happy
The camera man "when I start the video do a dramatic blink but at the end"
Praying for you all...
I have had Crohns since I was five, I'm thirteen now. I don't have much of my bowel left (around a metre). Also, battling stage four cancer. I'm okayy don't worry. Anyway, all luck will be very very appreciated :) #Cancerfighter xoxo Y'all are perfect. :D
I am very sorry for your condition. All I can say is I hope you stay strong as you can. Surround yourself with things and people who make you feel happy.
I wish you all the best.
This for house fans
Well.........................
It’s not lupus
😂😂
Except when it is lupus XD
@@PirateOfTheNorth its never lupus XD
OMG I'm not the only one!!!
U like BTS? Just asking random people
it's never lupus but... you will get a hunch
This makes me cry and it’s alright
Its sad and amazing ur the Best 😃
9:32 she cried.. I cried
This is why we have to appreciate our life. Some people are so *ungrateful.*
Bless the woman who is albino, I know it sounds bad, but back when she was young it didn’t matter that her genetic problem diagnosis wasn’t identified earlier because it looks like she had the correct treatment anyway , & as they say there is no cure .💔
Albinism yet still deep brown eyes, how unique!
She has dark blue eyes!
My uncle suffered from disease where he also uses bag for his poo... He hates Travelling because pooing is unpredictable. It can happen anytime and he worries the people arround him would smell it.. He lived with it for 25 years.... he died may 27,2022.... My fathers birthday ( his brother)
What is more painful than Losing a sibling. Not only that u lose them. But u lose them. On your birthday..... Celebtating his Birthday from now on would be challenging...
What a lovely dad and what a lovely husband :-)
Yes I know the pain of rare genetic disorders as I suffered from one
My brother also had an oleo stint at a young age- such a hard thing to deal with.
That autocorrected! Should say ileostomy.
**Girl on cast sneezes** camera man: AH! Do that again! **fake sneezes** ANDDDDDD ACTION!
Kayla XGames lol
😂
"Just holding her hand would cause her pain"
I think all my girlfriend's had lupus 🤔
Karen's dad looks like Tommy Pickles grandpa
😂😂😂
And her last name is tickle lol
I didn't know Crohn's disease was that bad you poor woman I feel so sorry for you and going when you were only eight years old you poor little girl . And then to have an operation and then things got good for you and then finding out more bad news but you are strong woman and I think you will make it. and I hope you do get to see your first grandchild so good luck.😁😥😥😁
Carolyn Nicholson that’s kind but she never has crohns she had HPS
That’s so scary sad...Jesus Please Heal This Lady.
Karen is so brave, she is a great person
My sister and brother had their large colon removed and they both have stoma bags
When your legally blind, they blink alot. Wish ppl would stop being so mean. Be grateful your healthy...
I think the comments are not about the blind woman specifically but because this channel uses blinking on many of its videos for dramatic effect. The same comments appear on other videos where no one is legally blind.
Emma Jayde Wilcox Do we? I’m registered blind despite having a small amount of vision in my left eye.
MollyXxx I do have some vision you know. Being registered blind doesn’t mean somebody is completely blind/can’t read.
It’s crazy how people in American cannot go and see their doctor the moment these terrible symptoms arise without fear of cost or lost work time. In the UK, anyone sensible would have saw their doctor the same day that pain became unbearable.
Karen and her family. Life goals :) . She could get hit by a truck and still come out a winner with hitting the jackpot of people around her. Her personality certainly helps. I am always hearing and seeing people and their not so great lives. So many bad partnerships. Also should shout the second couple 👍
Here we go again with the DRAMATIC EYE BLINKING!
this made me feel weak
Same
after watching this I am feeling stomach pain
I have similar symptoms to Pam, but not that bad o.o I should get checked.. but I am only 22
Karen is really a great and a very brave woman!😊
This is a really sad story
This is so sad 😭
Karen is so sweet ❤️
This show shows in which channel??
This woman is sooooo brave wooww
Karens so cute💕💕💕
Yes
So sorry 😭