51 Responses

  1. Kurt at |

    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.

    Reply
  2. Ash at |

    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.

    http://www.toptenz.net/top-10-odd-allergies.php <– Aquagenic Urticaria is listed there :)

    Thanks for reading!

    Reply
    1. Micalajade at |

      You forgot about this only 1 person in world has I think that accounts as rare

      Reply
      1. Micalajade at |

        Sorry forgot link here watch this
        http://www.youtube.com/watch?v=qcBDQr2FAww

        Reply
  3. Dave at |

    All of these are scary as crap, especially FOP… thank God some of us are luckier than others.

    Reply
  4. Soneka at |

    "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?

    Reply
    1. morgan at |

      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.

      Reply
  5. Saefas at |

    I believe that you may be lumping "microcephaly" together with "anencephaly."

    Reply
  6. joe at |

    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.

    Reply
  7. Chris at |

    Have you looked at crigler najjar especially type 1 it’s deffinatly rare!

    Reply
  8. Jaxynde at |

    how about sirenophelia (the disease where the legs are webbed together) only 2 people are known to have this disease in history

    Reply
    1. ashton at |

      actually…this affects 1 in every 100,000 live births and is usually fatal within a day or two of birth.

      Reply
    2. Kats at |

      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.

      Reply
  9. Alex at |

    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.

    Reply
    1. anne derbyshire at |

      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!!

      Reply
      1. Zach Gillette at |

        Nice counter-argument.

        Reply
        1. dee hendrixon at |

          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.

          Reply
          1. Alex at |

            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!).

            Reply
      2. Alex at |

        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.

        Reply
    2. Loren at |

      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

      Reply
    3. Richard Kuhns at |

      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

      Reply
    4. morgan at |

      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.

      Reply
      1. Alex at |

        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!

        Reply
  10. Maurice McCabe at |

    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 .

    Reply
  11. Phil M at |

    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..

    Reply
  12. Austin C at |

    How about Monomelicamyotrophy its racialy specific disease similar to ALS

    Reply
  13. Juds at |

    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.

    Reply
  14. Marie porter at |

    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 :(

    Reply
  15. FMH at |

    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!

    Reply
    1. anne derbyshire at |

      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.

      Reply
  16. Gujdusek at |

    Read about kuru, prions, mad cow disease here:

    Deadly Feasts: The “Prion” Controversy and the Public’s Health by Richard Rhodes

    Reply
  17. nobodyet at |

    Fatal familial insomnia

    Reply
  18. openmindedskeptic at |

    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

    Reply
    1. Alex at |

      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? :/

      Reply
  19. Peter Boucher at |

    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

    Reply
  20. Sara at |

    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.

    Reply
  21. Rich at |

    Microcephaly: now we know where career politicians come from…

    Reply
    1. Anonymous at |

      You almost made me asphyxiate for laughing.
      LOL!

      Reply
  22. paige at |

    I thought that lizzie velalquez’s genetic disorder would have been on here

    Reply
  23. Jambo at |

    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???

    Reply
  24. Zach Gillette at |

    Field’s disease sure sounds like Lou Gerhig’s disease (ALS) to me.

    Reply
  25. Hi at |

    I thought this is an article on the rarest…..how did the last 3 count? Fields disease should be first

    Reply
  26. Richard Kuhns at |

    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.

    Reply
  27. muscle syndrome at |

    dont forget Glassmacher Syndrome, a muscle disorder that only two people in the world have-my cousins

    Reply
  28. Tim Schmidt at |

    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

    Reply
  29. Sattwik Patra at |

    I think EPIDERMODYSPLASIA VERRUCIFORMIS is another rare disease in which a person starts looking like a tree.

    Reply
  30. Ryan Oboryshko at |

    What about Foreign Accent Syndrome?

    Reply
  31. asdf at |

    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.

    Reply
  32. Nancy Bosco at |

    another rare disease : Morgagni Syndrome

    Reply
  33. Karen Medeiros at |

    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

    Reply
  34. Anonymous at |

    small pox is very interesting. I might do it for a project

    Reply

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