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Doctors Describe The Rarest Disease They've Ever Encountered

Doctors Describe The Rarest Disease They've Ever Encountered
@austindistel/Unsplash

Reddit has the ability to bring people from all over the world together. This time, Reddit user MrKnowsEverything asked a serious question of the doctors of the world.

MrKnowsEverything posted:

"Doctors of reddit, what is the rarest disease that you've encountered in your career?"

The responses ranged from genetic mutations, to mental disorders, to injury from an accident. Often, leaving doctors with more questions than answer. A few stories end in a miracle, and a few in tragedy.

Some of these tales are gruesome. So, readers beware.



Torso like a water balloon.

Patient admitted for something unrelated starts deteriorating for no discernible reason. Has some mild generalized abdominal pain, but other than that no specific symptoms. However, he keeps worsening to the point where he's barely hemodinamically stable.

On the abdominal contrast CT, there's fluid everywhere. Organs pushed against the abdominal wall. Just one enormous grey puddle from the top of his pelvis to his diaphragm.

And then, at some point, there's a scribble of white pretty much smack dab in the middle of it all (in this context, signifying active bleeding) It was shaped like the world's smallest firework pop, and it was nowhere close any major vessel. Everyone was dumbfounded for a hot minute.

It turned out to be a spontaneous, atraumatic rupture of the cystic artery. No surgeon in the building had ever seen one. Dude underwent embolization and made it out completely unscathed

Cecil_the_Rengar

Blue skin.

Dermatologist here. Some fun ones:

  • Chromhidrosis, where sweat comes out in different colors. My patient's was blue.
  • Argyria, a permanent discoloration from silver overdose.
  • Aquagenic urticaria, an allergy to contact with water.

I had a patient who presented with purple/silver skin. He looked like a smurf and the silver surfer had a baby. However he was in the ER for abdominal pain and was highly offended when I asked him about his skin pigmentation. My first impression from across the room was that he was severely hypoxic and I was amazed he was walking and talking. He made comments that made it appear he was a huge conspiracy theorists so I was suspicious of colloidal silver toxicity. When I asked him about it he shouted angrily "I don't take silver supplements anymore!" After some prying, he said he took them to self treat for a prion disease which he self diagnosed from "the grape juice test" where you spit out grape juice into a Petri dish and "a fungus grows out of it". At this point I'm like yeah this patient is f*cking nuts. I'm pretty sure he listened to too much Alex Jones and as a result permanently died his skin blue, a condition called argyria

TheTallerTaylor

Ringing in the ear.

Objective tinnitus- I could lean close to the patient's ear and hear a ringing noise coming out. Central Deafness- patient had an anoxic brain injury and was essentially deaf even though there was nothing wrong with his ears.

To answer some of the questions below: the objective tinnitus was following an ear surgery. The patients middle ear muscles were twitching constantly causing a ringing sound and her eardrum was acting like a speaker so we could hear it outside her head. This does not happen often and I will probably never see it again. I don't know what ended up happening with her but I think the ENT did some revision to try to fix it.

palmaud

When mom had a stroke she became blind for a couple weeks. However while she was blind her severe deafness went away and she could hear me breathing on the other side of the room. When her vision improved she became deafer again. Her doctor was stumped.

Pristine-Medium-9092

Vanished without a trace.

Gorham's disease aka vanishing skull syndrome. A softball size area of my patient's skull disappeared and left behind a soft spot. she ended up with a plastic plate to protect her brain. Crazy disease.

Mediocre_Street9040

10 year old boy "pregnant" with his twin.

Fetus-in-fetu. 10 year old boy "pregnant" with his parasitic twin (PT).

Case 10 y.o. boy came in with enlarging abdominal mass and intermittent generalized weakness. Imaging revealed a parasitic "fetus" which was also growing in size. History revealed mass noted 2 years ago which enlarged rapidly the last 3-4 months. Within days of admission, boy's organs begin to fail with no apparent reason. He was healthy and eating well when he was admitted. Family wanted surgical intervention to separate the parasitic twin against surgeons' advice. parasitic twin was basically starving/poisoning the boy to death. Surgeons opened the boy up and found that the boy and parasitic twin share a (stomach, liver, heart, blood vessels - mesodermal organs) basically too complex to operate. The boy passed away after.

This happened to a poor family in a underfunded government hospital in a corruption-infested country. The parasitic twin was donated to the hospital. It had teeth with hairy limbs with the longest curved baby nails. I can't describe it further. It is on display at the Surgeon's Hall.

xtranscendentx

Believed he was dead.

Walking corpse syndrome - cotard delusion. 17 years in mental health and I've seen it once. The belief that some or all of you is dead. The guy was so certain he was dead he believed he was a zombie.

bittertiltheend

Persistent genital arousal disorder.

Persistent genital arousal disorder. Having multiple orgasms a day, at any time, without any stimulation; becomes quite bothersome and uncomfortable, limits your daily activities and sleep is interrupted. Over time patients can become very hopeless. It is remarkable the dissonance between the name and the obvious joke, and the tremendous suffering these patients endure.

Whatisdissssss

Two disorders, one genetic mutation.

Geneticist here. I work in a pretty big hospital and we get hard to solve cases from all over the world. Some of the cases are so unique, there is literally no name yet the genetic disorder. So those would be the rarest. But for the sake of this thread, I will discuss something that is not the rarest, but is pretty rare, and one of the most interesting:

Prader Willi or Angelman Sydrome. -these are two extremely different disorders that are both caused by the same exact genetic mutation. The only difference is if the mutation occurred on the paternal chromosome or the maternal chromosome.

If it occurred on the maternal chromosome, you get Angelman Syndrome which typically results in the child being overly happy, laughing all the time with light eyes and hair color, but also severe intellectual and physical disabilities.

If the mutation occurred on the paternal chromosome you get Prader Willi Syndrome, which results in the child having excessive hunger and can literally eat him/herself to death, but with only mild cognitive disability. These kids may go a very long time not getting diagnosed and will become quite obese.

letsgetdomestic

Skin over the eyes.

The rarest I've encountered is KID Syndrome (Keratitis Ichthyosis Deafness). A 5 year old, very sweet, blind girl who literally had rough, thick, opaque skin on the surface of her eyes.

riparian1211

The three words in the name define the 3 primary issues it causes. It causes keratitis which causes the blindness, it causes ichthyosis thus scaly skin, and lastly it causes deafness. The first two words are not adjectives that describe the blindness, it's simply three afflictions caused by a single root cause.

ThymeCypher

Some advice from an eye doctor

Eye doctor here:

Patient had bilateral acanthamoeba keratitis. Estimated that 0.0004% of contact lens wearers will be diagnosed with this condition in ONE EYE. My patient had it in both!

Acanthamoeba keratitis is a rare parasitic infection of your cornea.

My patient presented after coming back from vacation complaining of a little hazy vision and his eyes feeling a bit off. His cornea looked pristine but I did note a little ocular inflammation. Turns out he had an underlying autoimmune condition (ankylosing spondylitis) known to cause ocular inflammation (uveitis) and recently stopped taking his medication so I thought this was a slam dunk case. When he came back for his follow up, we realized this was not a slam dunk, and we sent him out to a corneal specialist ASAP and now he is back to 20/20 vision in each eye! His case ended up being caused by wearing his contact lenses while swimming in a lake!

Remember don't sleep, shower, or swim with your contact lenses on and make sure to visit your eye doctor for regular check ups :)

bhamos

If you're feeling a little anxious after reading this list, remember these are all the rarest these doctors have ever seen.

But then again, it did happen to someone!

Want to "know" more? Never miss another big, odd, funny, or heartbreaking moment again. Sign up for the Knowable newsletter here.

People Who Actually Died And Were Revived Share Their Experiences

"Reddit user AlaskaStiletto asked: 'Redditors who have 'died' and come back to life, what did you see?'"

Close up face of a woman in bed, staring into the camera
Photo by Jen Theodore

Experiencing death is a fascinating and frightening idea.

Who doesn't want to know what is waiting for us on the other side?

But so many of us want to know and then come back and live a little longer.

It would be so great to be sure there is something else.

But the whole dying part is not that great, so we'll have to rely on other people's accounts.

Redditor AlaskaStiletto wanted to hear from everyone who has returned to life, so they asked:

"Redditors who have 'died' and come back to life, what did you see?"

Sensations

Happy Good Vibes GIF by Major League SoccerGiphy

"My dad's heart stopped when he had a heart attack and he had to be brought back to life. He kept the paper copy of the heart monitor which shows he flatlined. He said he felt an overwhelming sensation of peace, like nothing he had felt before."

PeachesnPain

Recovery

"I had surgical complications in 2010 that caused a great deal of blood loss. As a result, I had extremely low blood pressure and could barely stay awake. I remember feeling like I was surrounded by loved ones who had passed. They were in a circle around me and I knew they were there to guide me onwards. I told them I was not ready to go because my kids needed me and I came back."

"My nurse later said she was afraid she’d find me dead every time she came into the room."

"It took months, and blood transfusions, but I recovered."

good_golly99

Take Me Back

"Overwhelming peace and happiness. A bright airy and floating feeling. I live a very stressful life. Imagine finding out the person you have had a crush on reveals they have the same feelings for you and then you win the lotto later that day - that was the feeling I had."

"I never feared death afterward and am relieved when I hear of people dying after suffering from an illness."

rayrayrayray

Free

The Light Minnie GIF by (G)I-DLEGiphy

"I had a heart surgery with near-death experience, for me at least (well the possibility that those effects are caused by morphine is also there) I just saw black and nothing else but it was warm and I had such inner peace, its weird as I sometimes still think about it and wish this feeling of being so light and free again."

TooReDTooHigh

This is why I hate surgery.

You just never know.

Shocked

Giphy

"More of a near-death experience. I was electrocuted. I felt like I was in a deep hole looking straight up in the sky. My life flashed before me. Felt sad for my family, but I had a deep sense of peace."

Admirable_Buyer6528

The SOB

"Nursing in the ICU, we’ve had people try to die on us many times during the years, some successfully. One guy stood out to me. His heart stopped. We called a code, are working on him, and suddenly he comes to. We hadn’t vented him yet, so he was able to talk, and he started screaming, 'Don’t let them take me, don’t let them take me, they are coming,' he was scared and yelling."

"Then he yelled a little more, as we tried to calm him down, he screamed, 'No, No,' and gestured towards the end of the bed, and died again. We didn’t get him back. It was seriously creepy. We called his son to tell him the news, and the son said basically, 'Good, he was an SOB.'”

1-cupcake-at-a-time

Colors

"My sister died and said it was extremely peaceful. She said it was very loud like a train station and lots of talking and she was stuck in this area that was like a curtain with lots of beautiful colors (colors that you don’t see in real life according to her) a man told her 'He was sorry, but she had to go back as it wasn’t her time.'"

Hannah_LL7

"I had a really similar experience except I was in an endless garden with flowers that were colors I had never seen before. It was quiet and peaceful and a woman in a dress looked at me, shook her head, and just said 'Not yet.' As I was coming back, it was extremely loud, like everyone in the world was trying to talk all at once. It was all very disorienting but it changed my perspective on life!"

huntokarrr

The Fog

"I was in a gray fog with a girl who looked a lot like a young version of my grandmother (who was still alive) but dressed like a pioneer in the 1800s she didn't say anything but kept pulling me towards an opening in the wall. I kept refusing to go because I was so tired."

"I finally got tired of her nagging and went and that's when I came to. I had bled out during a c-section and my heart could not beat without blood. They had to deliver the baby and sew up the bleeders. refill me with blood before they could restart my heart so, like, at least 12 minutes gone."

Fluffy-Hotel-5184

Through the Walls

"My spouse was dead for a couple of minutes one miserable night. She maintains that she saw nothing, but only heard people talking about her like through a wall. The only thing she remembers for absolute certain was begging an ER nurse that she didn't want to die."

"She's quite alive and well today."

Hot-Refrigerator6583

Well let's all be happy to be alive.

It seems to be all we have.

Man's waist line
Santhosh Vaithiyanathan/Unsplash

Trying to lose weight is a struggle understood by many people regardless of size.

The goal of reaching a healthy weight may seem unattainable, but with diet and exercise, it can pay off through persistence and discipline.

Seeing the pounds gradually drop off can also be a great motivator and incentivize people to stay the course.

Those who've achieved their respective weight goals shared their experiences when Redditor apprenti8455 asked:

"People who lost a lot of weight, what surprises you the most now?"

Redditors didn't see these coming.

Shiver Me Timbers

"I’m always cold now!"

– Telrom_1

"I had a coworker lose over 130 pounds five or six years ago. I’ve never seen him without a jacket on since."

– r7ndom

"140 lbs lost here starting just before COVID, I feel like that little old lady that's always cold, damn this top comment was on point lmao."

– mr_remy

Drawing Concern

"I lost 100 pounds over a year and a half but since I’m old(70’s) it seems few people comment on it because (I think) they think I’m wasting away from some terminal illness."

– dee-fondy

"Congrats on the weight loss! It’s honestly a real accomplishment 🙂"

"Working in oncology, I can never comment on someone’s weight loss unless I specifically know it was on purpose, regardless of their age. I think it kind of ruffles feathers at times, but like I don’t want to congratulate someone for having cancer or something. It’s a weird place to be in."

– LizardofDeath

Unleashing Insults

"I remember when I lost the first big chunk of weight (around 50 lbs) it was like it gave some people license to talk sh*t about the 'old' me. Old coworkers, friends, made a lot of not just negative, but harsh comments about what I used to look like. One person I met after the big loss saw a picture of me prior and said, 'Wow, we wouldn’t even be friends!'”

"It wasn’t extremely common, but I was a little alarmed by some of the attention. My weight has been up and down since then, but every time I gain a little it gets me a little down thinking about those things people said."

– alanamablamaspama

Not Everything Goes After Losing Weight

"The loose skin is a bit unexpected."

– KeltarCentauri

"I haven’t experienced it myself, but surgery to remove skin takes a long time to recover. Longer than bariatric surgery and usually isn’t covered by insurance unless you have both."

– KatMagic1977

"It definitely does take a long time to recover. My Dad dropped a little over 200 pounds a few years back and decided to go through with skin removal surgery to deal with the excess. His procedure was extensive, as in he had skin taken from just about every part of his body excluding his head, and he went through hell for weeks in recovery, and he was bedridden for a lot of it."

– Jaew96

These Redditors shared their pleasantly surprising experiences.

Shopping

"I can buy clothes in any store I want."

– WaySavvyD

"When I lost weight I was dying to go find cute, smaller clothes and I really struggled. As someone who had always been restricted to one or two stores that catered to plus-sized clothing, a full mall of shops with items in my size was daunting. Too many options and not enough knowledge of brands that were good vs cheap. I usually went home pretty frustrated."

– ganache98012

No More Symptoms

"Lost about 80 pounds in the past year and a half, biggest thing that I’ve noticed that I haven’t seen mentioned on here yet is my acid reflux and heartburn are basically gone. I used to be popping tums every couple hours and now they just sit in the medicine cabinet collecting dust."

– colleennicole93

Expanding Capabilities

"I'm all for not judging people by their appearance and I recognise that there are unhealthy, unachievable beauty standards, but one thing that is undeniable is that I can just do stuff now. Just stamina and flexibility alone are worth it, appearance is tertiary at best."

– Ramblonius

People Change Their Tune

"How much nicer people are to you."

"My feet weren't 'wide' they were 'fat.'"

– LiZZygsu

"Have to agree. Lost 220 lbs, people make eye contact and hold open doors and stuff"

"And on the foot thing, I also lost a full shoe size numerically and also wear regular width now 😅"

– awholedamngarden

It's gonna take some getting used to.

Bones Everywhere

"Having bones. Collarbones, wrist bones, knee bones, hip bones, ribs. I have so many bones sticking out everywhere and it’s weird as hell."

– Princess-Pancake-97

"I noticed the shadow of my ribs the other day and it threw me, there’s a whole skeleton in here."

– bekastrange

Knee Pillow

"Right?! And they’re so … pointy! Now I get why people sleep with pillows between their legs - the knee bones laying on top of each other (side sleeper here) is weird and jarring."

– snic2030

"I lost only 40 pounds within the last year or so. I’m struggling to relate to most of these comments as I feel like I just 'slimmed down' rather than dropped a ton. But wow, the pillow between the knees at night. YES! I can relate to this. I think a lot of my weight was in my thighs. I never needed to do this up until recently."

– Strongbad23

More Mobility

"I’ve lost 100 lbs since 2020. It’s a collection of little things that surprise me. For at least 10 years I couldn’t put on socks, or tie my shoes. I couldn’t bend over and pick something up. I couldn’t climb a ladder to fix something. Simple things like that I can do now that fascinate me."

"Edit: Some additional little things are sitting in a chair with arms, sitting in a booth in a restaurant, being able to shop in a normal store AND not needing to buy the biggest size there, being able to easily wipe my butt, and looking down and being able to see my penis."

– dma1965

People making significant changes, whether for mental or physical health, can surely find a newfound perspective on life.

But they can also discover different issues they never saw coming.

That being said, overcoming any challenge in life is laudable, especially if it leads to gaining confidence and ditching insecurities.

In 2017, I returned to my office after my lunch break to hear my supervisors discussing Tom Petty. This seemed like a random topic to me until one of my supervisors told me Tom Petty had passed away. He was a huge fan of Petty and spent the next hour or so combing through the internet to get more information.

He came back into the room my other supervisor and I were working in and announced that Tom Petty wasn't dead after all. News outlets had jumped the gun to announce his death, but he was actually still alive.

The next day, I came in to find out that Tom Petty was dead; the news may have been premature, but true.

This is a classic example of the rumor being started on the internet. Sometimes, like with the news of Tom Petty's death, the rumor can run wild and appear everywhere. Other times, the rumor can be seen by just a few people and dismissed. However, a lot of times, these rumors turn out to be true.

Redditors know a lot of internet rumors that turned out to be true, and are eager to share.

It all started when Redditor strakerak asked:

"What started out as an internet rumor that ended up being infamously true?"

The King Of Pop

"Michael Jackson writing the music for Sonic 3."

"He actually did, but was never credited on the game because it would breach his contract with his record label."

– -WigglyLine-

"He did the same when he appeared on The Simpsons. He appeared under a pseudonym, and the Producers said it was an impersonator."

"Only years later they confirmed it really was Michael."

"His singing voice was actually done by an impersonator, though."

– given2fly_

The Truth Comes Out

"In 1998, US Men’s National Team captain John Harkes was shockingly cut from the team right before the World Cup. The coach claimed it was because Harkes wouldn’t fit into his new preferred formation, but rumors flew on the early internet that it was actually because he had slept with his teammate Eric Wynalda’s wife. The rumor was so well-known in soccer circles that Harkes expressly denied it in his autobiography the next year."

"Fast forward 12 years to 2010 and Wynalda admits it’s true. The coach then came out and admitted it was why he dropped Harkes, but that he’d planned to keep the secret as long as Wynalda did."

– guyfromsoccer

Video Evidence

"The Tim Burton Hansel and Gretel that aired once on halloween in the 80's."

"I heard for years that it was fake but I knew it was real because my dad recorded everything in the 80s and he recorded that. We let a good friend of ours borrow it and switch it over from VHS to DVD and soon after that it made its way on to the internet , and there it is now. I know it's our copy because the tracking in the beginning is screwed up. Still have the VHS."

– Frozenthickness

"There was a similar story with a Nickelodeon movie called Cry Baby Lane. It was supposed to be so scary that Nickelodeon got complaints and denied its existence for years. Someone uploaded a taped copy to youtube about a decade ago."

– PattiAllen

The Movie Business

"That North Korea hacked Sony Pictures because of The Interview movie."

"I worked in the movie business at the time and the account managers at Sony all basically needed to get new identities as all of their personal information got leaked online."

OldMastodon5363

"My partner worked on that movie and the production bought all the crew 1 year of an identity theft tracking service."

CMV_Viremia

Keep Away From The Ears Of Kids

"Some banned episodes or scenes of cartoons."

"For example, I remember there was a Dexter’s Lab cartoon where he clones evil versions of DeDe and himself and they swear like every other word (censored of course), and people debated whether it even existed cause they only aired it like once. Now it’s pretty accessible online."

– Spledidlife

Yes, It's True

"Echelon, a massive electronic espionage system by the US and allies to intercept all electronic messages, especially emails."

"In the mid-nineties it was a topic on conspiracy BBS boards. A lot of people in my bubble at the time (mainly uni students in Europe) were including fake threats to the US in the their email signatures as a way to "protest" and "fill the system with false alarms" (obviously useless)."

"Then, in 1999-2000 came out to be true and a lot of security service agencies from UK and other US allies started to admit they were part of the espionage network."

– latflickr

How The Mighty Fell

"John Edward’s love child."

– ACam574

"A reminder that he was cheating on his wife while she was hospitalized for cancer treatment."

– Fanclock314

Ugh...

"Carrie Fisher's heart attack. Some a**hole who was on the same flight was livetweeting the whole medical emergency and justified it by insisting she was just making sure the family was informed."

– everylastlight

It Actually Happened

"Every year around her birthday there was a rumor that Betty White died. When I heard she died, I scoffed, saying that dumb rumor is back.... then saw it on the news. I was in shock."

– Known-Committee8679

"The fact that Betty died literally right before she turned 100 is such a Betty White way to go out."

– Paganigsegg

Big Actor, Small Roles

"I distinctly remember some rumors about the reason why Bruce Willis was taking so many roles in sh*tty movies before it was announced he has dementia."

– KampferMann

"RedLetterMedia did a deep dive on his recent movie activity to try and work out why exactly he was taking part in basically scam-movies. They noticed he had an earpiece in one of the scenes and joked that the director was feeding him lines. I remember they even disclaimed over the rumours at the time, and possible made a follow-up vid when it was revealed to the public."

– CardinalCreepia

What To Do Next?

"That the writer of LOST were making it up as they went."

"Turned out to be absolutely true."

– homarjr

That last one was kind of obvious!

Do you have any to add? Let us know in the comment below.