While we’ve all heard of diseases, seen someone with a disease, and had a disease personally, it’s unlikely that we’ve encountered a rare disease. In the non-medical world, people use and interchange disease to mean infection, sickness, illness, or something similar. In the medical world, a disease is an abnormal condition that impairs bodily functions and is often associated with certain signs and symptoms.
Also called an orphan disease, rare diseases are those that are extremely uncommon and often have such low prevalence that a common doctor would not run into more than one case of that disease over a course of years, if ever. Here is a list of 10 diseases that rarely affect people.
Warning: Some of these images are disturbing, younger readers or those not wishing to see these images may want to look at some of the smartest animals.
10. Morgellons
Today, Morgellons stands as a very poorly understood disease that some doctors seem to believe if a chronic infectious disease. Sadly, the disease is usually disfiguring as well as disabling. The disease is classified by biting, itching, or crawling sensations, filaments that grow from the skin, and skin lesions, as well as memory loss, joint paint, and fatigue. Morgellons is still not recognized by the entire medical community, but there have been about 2,000 people within the U.S. who believe they suffer from the disease. Some of the reports are children, who are said to be unable to do normal things such as going to school or playing sports. There is no known cure or effective treatment for Morgellons.
9. Paraneoplastic pemphigus (PNP)
Though there are many forms of pemphigus, paraneoplastic pemphigus is the least common and most serious. PNP is a rare autoimmune bullous disease that causes blistering. Keratinocytes, which are what make up the epidemus, separate from each other, leaving gaps. Many times the gaps become filled with fluid peel off, leaving the skin raw and open to infection. These blisters usually appear in the mouth, throat, lips, and random places on the skin. The disease is also extremely fatal, as 90% of those diagnosed with the disease die due to sepsis, multi-organ failure, or cancer that caused the disease.
8. Microcephaly
Microcephaly is a very rare condition that is noticeable immediately at birth, and sometimes even before. It affects 1 in every 666,666 in the U.S. With microcephaly, the brain is unable to develop properly, or in some cases ceases to grow at all, while the baby is still in the womb. This causes the head to be smaller than a normal infant’s head at birth. Many believe that the disease is caused by exposure to harmful substances while in the womb, exposure to radiation, or genetic problems. The disease is usually paired with Down’s syndrome. Those who have microcephaly are usually mentally retarded and will have issues with hyperactivity, dwarfism, seizures, balance issues, speech and motor problems, as well as others.
7. Von Hippel-Lindau (VHL)
Von Hippel-Lindau disease (VHL) is said to affect one in 35,000 people. It is an extremely rare genetic condition that is characterized by the growth of tumors in different parts of the body. Many of the tumors will grow within the central nervous system and are often benign, but are made of blood vessels. Medically known as hemangioblastomas, these tumors can start to grow in the retina, the brain, and the spinal cord. Different tumors are also known to grow on the pancreas, adrenal glands, and kidneys. If left untreated, the disease can cause strokes, heart attacks, and cardiovascular disease.
6. Kuru
As rare as it is, Kuru is one disease that is fatal. However, it is so rare that the disease is confined to an area in New Guinea, more specifically the Fore tribe that lives in the highlands. The disease came about as a result of cannibalism, which is a ritualistic practice in which the tissues of others, especially the brain, were cooked and consumed. Those affected with the disease usually become unable to eat or stand, and then about 6-12 months later die in a comatose state. It is said that about 1,100 people died from Kuru during the 1950s and 60s. Because of government intervention and a wide-spread effort to end cannibalism, Kuru has now mostly disappeared.
5. Fibrodysplasia ossificans progressiva (FOP)
Fibrodysplasia ossificans progressiva (FOP) is a rare genetic disease that affects the connective tissue. The disease is said to only affect 1 in 2 million people. Around the world there have been 700 confirmed cases of the disease, 285 of those being in the U.S. FOP is classified when the body causes fibrous tissue, such as ligament, muscle, and tendons, to become ossified, or to change into bone when damaged. This means that a fall can cause bone to grow within the muscles and tendons throughout the body. FOP stands as the only disease known that causes one type of organ system to turn into an entirely different one. At birth, the classic symptom of the disease is a malformation of the big toe. There is no known treatment for FOP, as surgery to get rid of the bone, seems to cause the body to produce even more.
4. Fields’ disease
Fields’ disease is said to be the rarest disease in the world. It is named after two twins, Catherine and Kirstie Fields from Wales. The disease doesn’t have a medical name, but doctors have been able to call it a neuromuscular disease. The muscles within the body slowly deteriorate, which limits movements. The girls’ disease has been studied by doctors from all over. Because the disease is so rare and unknown, doctors aren’t sure what will happen next. The disease has since limited the lives of the girls, binding them to wheelchairs and making a simple task such as writing, hard.
3. Hutchinson-Gilford Progeria
Usually known as just Progeria, this condition is one that only affects one in about 8 million children born. Most born with the condition only live to be about 13, while others have been able to live into their early twenties. Progeria is a genetic condition that occurs due to a new mutation characterized by the dramatic, rapid appearance of aging beginning in childhood. In most cases, the disease is not inherited, though there has been a case of a similar condition where the parents carry the protein genetically and then pass it on to their children. There is no cure for Progeria, though doctors have tried growth hormone treatment as well as anticancer drugs. Usually doctors try to focus on reducing complications of the disease.
2. Polio
First known and recognized in 1840, polio is a disease that is spread from person to person, or through the means of contaminated food or water. Most cases of polio exhibit no symptoms, unless the disease is introduced through the blood stream. In most cases, polio causes paralysis and muscle weakness. Though a widely spread disease during the early 90’s, polio has since became eradicated in 36 countries. In 2002 Europe stated that it has no seen a case of polio since the poliovirus vaccine. Only four countries in the world as of 2006 still consider polio to be an endemic.
1. Smallpox
We’ve all heard about smallpox, probably more so about the vaccine itself, which today is rarely used unless there is a high-risk of the disease. It is said that smallpox may have been around in as early as 10,000BC. Smallpox is characterized by a high fever, fatigue, and a rash with flat red sores that can eventually cover the entire body. Many believe that smallpox was one of the deadliest diseases, killing around 300-500 million in the 20th century, in 400,000 each year throughout the 18th century. However, due to immunization worldwide, the last reported case of smallpox was in 1977. Because of this, the disease is said to be extremely rare. Today, the threat of smallpox still exists, but in the form of bioterrorism.
60 Comments
What about Democratitis or libralitise? those are the worse diseases especially combined!
oooohhh ggaawwwddd!!!
amen GOD plzzz guide n protect
What about RAHHAD only 15 cases have been reported
What about Sneddon Wilkinsons disease. It’s like pemphagus but even fewer of us. Smh 5 of us want to be recognized!
Almost every resonable medical professional is convinced that Morgellons isn’t a real condition. On the other hand there is a lot of proof that it is. And what does this proof say: It’s a virus, it’s a parasite, it’s caused by toxins, it’s caused by GMO, it’s caused by flouride and it’s a government conspiracy.
Yes, that sounds very reasonable.
If you’re curious about rare diseases, try researching micropsia, or Alice in Wonderland syndrome.
small pox is very interesting. I might do it for a project
I was diagnosed with Bow Hunter’s Disease in 2013 and was told it was very rare and that only approx. 40 people in the world have so I was wondering if it was true and if so why isn’t it on your list.
Thank you,
Karen Medeirs
another rare disease : Morgagni Syndrome
Nice list. Just thought I’d let you know Morgellons isn’t officially recognized as a disease and is believed to be, more likely than not, delusions by those claiming to suffer it. Those with Morgellons claim to find fibers in sores and whatnot and there is no medical truth to any of those claims.
you are a typical stereotyped brainwashed good little American as I once was, I like you once believed what the major medical establishments claimed to be fact. I,m 62 years old. I’m not a conspiracy theorist, not a nut case, I am a fairly well educated, but simple life style kind of man. My wife of 30 years has fibers growing inside her body, in her mouth and through her tongue. I see them daily. Because of a medical establishment that would rather have a few people suffer their condition until certain death, rather than admit that they are wrong and people who are preconditioned ( like you) to be a good little citizen and side with the big boys and believe in your head these “so called” imaginary conditions / diseases don’t exists, is why my beloved wife will not seek medical help. What really does not exists is a caring medical community and an open minded non judge mental society. My wife (by the way) is a nurse and had been a Medicare Coordinator for years before she was stricken by this terrible, unbelievable condition. I would not wish this on anyone, but, if the tunnel-vision, blinder wearing doubters had one of those fibers running through their tongue for one hour, you would not be the way you are.
What about Foreign Accent Syndrome?
I think EPIDERMODYSPLASIA VERRUCIFORMIS is another rare disease in which a person starts looking like a tree.
Excellent post, Sean.
As a Patient Advocate involved in rare diseases, I very much appreciate posts like this. If thereâ??s anything I can do to help, please do hesitate to get in touch.
I certainly like making new connections
I applaud your stance!!
Best,
Tim
dont forget Glassmacher Syndrome, a muscle disorder that only two people in the world have-my cousins
I contracted itchy skin parasites in the mid 90’s. The itching, biting, skin eruptions, rashes nearly ruined my life. Fortunately I discovered a diet that I named the King Diet that made life bearable. I published it on the internet and found many other sufferers benefited from the diet as well. In the early part of the new century several words were being thrown about to diagnose what we had. The words were:
Morgellons
Collembola
Spring Tails
Strongyloides stercoralis
Some sufferers claimed that there was no such thing as Morgellons and that we all suffered from Strongyloides stercoralis (a rare nematode).
Many doctors told us that we suffered from folie a deux (that it was all in our heads if two of us in the same family had it). Ah, but if they could have experienced the hell of the relentless itching and biting for just ten minutes they never would have been so ignorant.
Through communication with hundreds of sufferers I came to realize that while some symptoms are the same for everyone, there are distinct symptoms for each parasite and that we are indeed dealing with three distinct types of skin parasites:
Morgellons
Collembola–also known as spring tails
Strongyloides stercoralis
The only one that can be diagnosed is Strongyloides stercoralis with a serum blood test. Personally I had both collembola and Strongyloides stercoralis and am one of the first to sucessfully get my life back to normal again.
I published my first book titled, Soothing the Itch Within and the Diet to Control It in 2006. It’s been updated and republished in 2012 as How to Get Your Life Back From Morgellons and Other Skin Parasites.
The book covers in detail how to tell the difference between each parasite from one’s symptoms. It provides information you’d hope to get from your doctor, but he doesn’t know—information on how to inexpensively disinfect your surroundings and how to bath. The book provides the three stages of the King Diet which goes by no theory. It researches the doctors who work with Morgellons and their theories, but more importantly the book gives you a,b,c directions on how to take your life back and get normal again using just a few relatively inexpensive agro enzymes, nutrients, skin cream, and an important medication.
And oh, yes, if you want to know the rifing frequencies (not that you’ll need them) they are also in the book. For the most comprehensive book on the subject of Morgellons and other skin parasites, go to http://www.SkinparasitesEbook.com or google the title.
I thought this is an article on the rarest…..how did the last 3 count? Fields disease should be first
Field’s disease sure sounds like Lou Gerhig’s disease (ALS) to me.
If a disease is so rare that doctors don’t even know what to call it and so name it Fields’ disease, after the only 2 people who are known to ever have it. My question would be why isn’t that number 1???
I thought that lizzie velalquez’s genetic disorder would have been on here
Microcephaly: now we know where career politicians come from…
You almost made me asphyxiate for laughing.
LOL!
MANY people think that Polio was eradicated but really the name was just changed to viral or aseptic meningitis. There are still 30,000 to 50,000 cases of viral or aseptic meningitis every year. That is where the 30,000 to 50,000 cases of polio disappeared to and people are THINKING that it was eradicated.
How about Guillain-Barre Syndrome. It affects the bodies immune system which in turn, affects the bodies nervous system. Symptoms are Muscle Weakness, A Tingling sensation throughout the body, Foot and Hand Pain, Clumsiness, Loss of Reflexes, Low Blood Pressure, Paralysis and Artificial Breathing Support is required when in the hospital
There’s a huge chance that Morgellon’s is fake, but there’s also a huge chance that it’s caused by genetically-modified food, either an allergy to them or sensitivity to certain pathogens caused by them. The fibers, if they’re really what the suspected sufferers say that they are, are supposedly very similar to plant diseases that cause abnormal, hard growths. Basically, it seems to be a plant disease that has transferred to humans! Scary. The CDC is investigating it as “unexplained dermopathy.” If it is something real, I sure hope that they figure out what it is soon; I heard that it can even be fatal!
Of course, may cases are, indeed, delusional parasitosis. Whether some are real or not, only time and science will tell! Whatever it is, I sure hope that I never get it. *shudder*
I have another rare and wacky skin disease, though, dermographic urticartia, a.k.a. skin writing. It’s basically an allergy to scratches or pressure. I can doodle and write on my skin with any blunt object, and it’ll swell up into whatever the pattern was! Pretty cool. There are severe cases that are quite disabling, though. Fortunately, mine is a mild-to-moderate case that just itches a little, but the itching is worth it to play around with it. :3
Good luck with your condition. That sounds like it would be pretty annoying. I guess having your gf/bf write on your back with their finger while you’re sitting next to each other is out of the question. Ha. What if someone slapped you across the face, would you have a huge puffy handprint on your cheek? :/
Fatal familial insomnia
Read about kuru, prions, mad cow disease here:
Deadly Feasts: The “Prion” Controversy and the Public’s Health by Richard Rhodes
Morgellons is poorly known to most doctors because it doesn’t exist. It shouldn’t be in a list like that. Otherwise, you could have included things like “being possessed by the devil” or “skin rash due to alien implants”: You will find people who claim they have it, but they are either misinformed by quacks or should see a psychatrist.
No objection with the rest, decent list!
FMH
FMH, you avnt got a clue have you! How dare you insult the those suffering from morgs’ it is 100% real and you are arrogant. Babies today are being born with this pathetic, horrid, disturbing disease which are causing all kinds of health problems to the child/ren ie severe headaches or burning pins nd needles to top/bk of head, nausia/stomach pains evry single day, numbness in joints, constant dental pain even after a visit to the dentist ( thnk they get fed up of seeing the same kids wk after wk/ or couple times a month because the dentist cant see anything wrong with the teeth and dont see anything wrong in painting there little teeth with ‘FLUORIDE’). The symptoms above come from toddlers up to 10yr olds that i know and thats just afew of their complaints.Just because you and and others dont have any symptoms ‘YET’ and because many pros’ diognose patients as dillusional, does not mean it dosnt excist, infact it is people like you who needs see the quack as it shows your brains are not in order as you/they dont see that theres something strange happening if thousands upon thousands of families, worldwide, are saying they have this disease, for pity’s sake why on earth would people make this up. on the other hand why are people not asking themselves , why are at least 2000/3000 people a day regeristing themselves and their fams’ with this disease. dont be so nieve you lot as your time is nearing rapidly to be adding your names to the long , very long list. trust me. there is a large amount of proof all over the internet, so if you cant be bothered to search and learn more about it or about the sane people who have it, well thats your lookout just plz leave the insults out, because youll be begging these sites for a cure for you soon enough. oh and the symptons come on all of a sudden(all at once) just like the switching on or off of a light. gd luk to all who experience this.
I have no need to insult anyone. You are doing that to yourself just fine. Just go ahead and read what you wrote there. Tell me that it doesn’t sound crazy.
This all touched my heart. It almost made me want to cry seeing all these diseases and syndromes that make innocent People suffer with no regard of their feelings. :'( I researching for my project on gentic diseases. This was all extremely helpful yet traumatizing to my emotions 🙁
This is so lame. Take it off, do your research properly and post it again. “Microcephaly… … 1 in 666,666…” So dramatic! Also, you are politically incorrect.
Honestly, this is quite a misleading article. Take it off.
How about Monomelicamyotrophy its racialy specific disease similar to ALS
What about CIPA (Congenital insensitivity to pain with anhidrosis). It is a rare condition where people dont feel pain. Apparantly, there is less than 100 reported cases in the world today..
You missed Pompe in your list .Untreated the child will pass away before the age of one year .Much Thanks to the studies at Duke University and the dedicated people there and around the world the mortality rate is better .
Morgellons is NOT a real disease.. The fact you included it in this list means you either didn’t do ANY real research and/or you’re a part of the elite group of nut jobs that believe we didn’t land on the moon, Sasquatch runs around the woods, and 9/11 was an inside job. People who believe they have “Morgellons” almost always show varying degrees of paranoid schizophrenia and various other mental conditions. The support groups for Morgellons are the same people who believe that the contrails from airplanes are really secret government chemicals that are dropped on the people, in fact they’re starting to say that that’s where Morgellons comes from.
Alex go get yourself a life and if thats a wee bit hard for you why not try taking a parachute jump into the jungle, worst is that can happen is being caugt by cannibals or a lion, maybe a croc!!
Nice counter-argument.
ALEX, Have you met karma? She’s been pretty busy lately but dont worry she’ll get to you. There’s a saying I wrote it goes something like this: ” I am always open to your advice suggestions and opinions, just be sure that you educate yourself first so you will know wtf i’m talking about. Ive had morgellons for 2 years.
I apologize, I meant for the last comment I posted to be a reply to this one, not “anne derbyshire’s” comment about lions tigers and bears (oh my!).
Don’t waste your time convincing me, my opinion on the matter means exactly squat in the grand scheme of things. Try convincing organizations like the CDC (Center for Disease Control) or the AMA “American Medical Association”. Don’t you think every doctor, hospital, and pharmaceutical company in the world would LOVE another disease they could charge people to treat and/or cure?
If you currently believe you suffer from “Morgellons”, I highly suggest you seek out professional psychiatric help. I’ve dealt with my own mental disorders (addiction and anxiety if you’re curious), and I personally know the hell that is living with an unsound mind. Take the ego down a notch, open up your mind to suggestion, and seek out a professional who you feel comfortable opening up to. I doubt Morgellons is your only problem. I’d wager that there’s all sorts of problems you deal with on a daily basis that you just can’t quite figure out. You’re probably always wondering why others don’t have to put up with the same crap, and thinking that life is much harder than it should be. That’s what unsound thinking does to a person, it negatively effects every aspect of their life and prohibits any kind of serenity or happiness. Please get help, you deserve to be well. Good luck.
First of all asshole 911 was an inside job read children of the matrix by David icke. And u should know that calling someone a nutjob for listing a disease that may or may not exist is just a mistake he’s not a nutjob. Wake up quit being a sheep and grow up
Yes, according to the results of the cursory research the CDC recently published, morgellons is more a problem in the mind. But then they didn’t recognize Lyme disease either for a long time.
I say this. If you believe the CDC, I know of several people whom I’d like you to meet personally and simply use a hand towel that they used on their body. I dare you to rub your face with the towel and then tell these people who have strange lesions, bugs of some sort emanating from their bodies, hard nodules under the skin, intense biting sensations under the skin, strange fluorescent fibers growing from these lesions, and so on that it’s all in their mind or that there is no physical reason for these symptoms that their doctors have told them.
Want to read more about it, go to http://www.skinparasitesebook.com
Alex my comment stands. DO NOT MAKE THOSE COMMENTS about Morgellons or any other subject unless you are knowledgeable. And ledgeble about it. And I’m not talking about knowledge that you gained from a comic strip internet or silly cartoon. Quit trying to fit in by using this website to gain popularity. The only thing you’re gaining is a lot of pissed off people. You would have to be a researcher a friend of someone who has this disease or experience the disease yourself before you have any knowledge of it. Why don’t you go play with your GI Joe doll.
These aren’t my opinions, I’m basically just repeating the general consensus of every major medical establishment. If the CDC, WHO, or AMA don’t recognize a disease, that should tell you something. I believe (along with the above mentioned organizations) that Morgellons is “real” in a sense, and that it needs to be taken seriously, but it’s a psychological disease, not a physiological one. It’s hard to refute the fact that the VAST majority of people who claim to suffer from Morgellons also suffer from paranoid schizophrenia.
I can really only repeat what I’ve already said: If you believe you suffer from Morgellons, do yourself a favor and seek out professional psychiatric help. You shouldn’t have to go through life with an unsound mind; nobody deserves to live like that. Maybe then you can start to truly heal the underlying cause of your problems. It’s never easy to ask for help, especially when it comes to mental diseases. Nobody is ashamed when they find out they suffer from physiological problems, but if it’s a psychological problem all of the sudden they’re embarrassed and would rather hide or deny it. It shouldn’t be that way. Screw the stigma, you deserve to be well.
I really don’t have anything else to add to the matter, other than saying good luck to all of those who suffer from ANY psychiatric disease. Coming from someone who’s battled my own mental problems, I know how difficult can be, but I also know it’s worth the pain and hard work. You CAN get better!
how about sirenophelia (the disease where the legs are webbed together) only 2 people are known to have this disease in history
actually…this affects 1 in every 100,000 live births and is usually fatal within a day or two of birth.
It is called sirenomelia (or mermaid syndrome) and it is true that just one has lived with their legs together–Shilo Pepin, who died at age 10. I believe there are currently two living born with the condition but who had separation. It would have been worth listing since this list showed two that are not that rare.
How about proteus syndrome? That should be on here.
And since this list included congenital abnormalities, how about fetus in fetu and parasitic twins–both have only had 50-100 known in modern medicine.
And one of the rarest of all–craniopagus parasiticus. Only three have been known in modern medicine (the first in 1800, the other two, coincidently in 2002 and 2004.
Have you looked at crigler najjar especially type 1 it’s deffinatly rare!
I used to work with a guy who I think had Morgellons. There was never anything visible growing from his skin, but he swore he had a hair that was growing all over his body just under the skin and sometimes out of it. It wrapped around his head and went all over his arms. Sometimes he would come to work covered in sores from trying to cut or pull this hair out. He was constantly pulling at imaginary hairs and tossing them aside like he had just walked through a spider web.
I believe that you may be lumping "microcephaly" together with "anencephaly."
"Today, Morgellons stands as a very poorly
understood disease that some doctors seem
to believe if a chronic infectious disease.
Sadly, the disease is usually disfiguring as
well as disabling. The disease is classified by
biting, itching, or crawling sensations,
filaments that grow from the skin, and skin
lesions, as well as memory loss, joint paint,
and fatigue."
I experience biting, crawling AND itching sensations and minor lesions resulting from scratching but not fatigue,memory loss i experience seems normal. I've been to the hospital but was told twas nothing serious.
How long does it take for the condition to become unbearable?
Soneka just when you think it’s unbearable you will find that you’ll get through it. I have had this disease for 2 years and I know. It brought me to my knees crying uncontrollably. It taper off until it just becomes more of a nuisance. I don’t know if you have the morgellon hair but that never goes away. I live in AZ and this summer i suffered when it was humid. Im hoping to have relief as it cools down. I can tell you what the cause of morgellons is. I am 99% sure and have been in touch with Randy Wymore. I don’t know where you’re from but. it is hitting everywhere. Arizona begin using an experimental pesticide. They used af 36. ASPERGILLUS FLAVUS without the aflotoxins. Put it on degermed wheat seed and by plane put on our cotton crops. What was only supposed to be done in Arizona they also end up using in Texas and California. The three main states with the highest number of morgellons patients patients. Its complex but AGROBACTERIUM was used to create the gm plant sweet potato. It produced bacillus thuringiensis (hence bt potatos, bt cotton, bt pistachios). BT Contains CRY PROTEIN. Each plant makes a different strain of the cry protein. This is the part that the extract for the pesticide. Well the cry and af36 didnt mesh well and the af36 became aggressive renamed btaf36. The black specks or the excessive perfectly round lintballs (cotton (is indeed cotton and aspergillus.
All of these are scary as crap, especially FOP… thank God some of us are luckier than others.
Kurt,
That would have been a great addition. But, I did include it in another one of my lists, so I didn't want to reinclude it on this one.
https://www.toptenz.net/top-10-odd-allergies.php <– Aquagenic Urticaria is listed there 🙂
Thanks for reading!
You forgot about this only 1 person in world has I think that accounts as rare
Sorry forgot link here watch this
http://www.youtube.com/watch?v=qcBDQr2FAww
What about Aquagenic Pruritus, I'm not sure how many people have this skin disease but if I remember it's pretty rare. Its where the skin develops intense burning and itching after contact with water and can be pretty severe. Anyway nice list, website, toptenz.