Talk:Porphyria

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older entries

Is this article showing a bug in MidiaWiki?

The link to George III shows red when looking at the article, but when doing a diff or a preview it looks right.

--KayEss 16:15, 16 Oct 2004 (UTC)

External link(s)

Enough people told me that it shold always be External links even if there are only one as a matter of policy that it was pretty standard. That appears to be what most people hve used over the last year. The Wikipedia:External links article now says singular, but I note that that was only changed on March 18 and the person who put it there was an anonymous user. Based upon the comments on the talk page saying that it should be plural even when there is only one, and there being no contradiction to this elsewhere except by this one anon user, I am going to remove what the anon user said from that page. DreamGuy 14:49, Apr 7, 2005 (UTC)

We're discussing this on your (and my) talk page, as it does not pertain specifically to this article. JFW | T@lk 21:12, 7 Apr 2005 (UTC)

It refers to edit comments on this article, which is why I placed it here. DreamGuy 22:07, Apr 7, 2005 (UTC)

Well, I am not responding to you here. How's that for an oxymoron. JFW | T@lk 13:51, 8 Apr 2005 (UTC)

Fine by me. :-) Looks like consensus on the Wikipedia:External links page is that there is no consensus. DreamGuy 16:48, Apr 8, 2005 (UTC)

Heh. Agree not to disagree. JFW | T@lk 17:03, 8 Apr 2005 (UTC)

Frederick William II of Prussia

Someone added Frederick William II of Prussia as a porphyria sufferer. Google had virtually nothing compared to George III, so I've removed this as distant speculation. JFW | T@lk 06:50, 4 August 2005 (UTC)

Request for expansion

The article could still do with some epidemiology, prognosis and complications. I've been expanding piecemeal but am a bit hesitant to continue, as I have nil clinical experience with this condition. Does anyone else have experience with this? JFW | T@lk 19:58, 26 September 2005 (UTC)

more on porphyria...

I have a very active case of coproporphyria and stay in touch with many persons who have other types as well. Symptoms and prognosis vary tremendously. I will post suggestions here as I study the original article.

Enzyme location

Out of the 8 enzymes listed in the Heme biosynthetic pathway, it is stated that the first and last 3 are in the mitochondria and the remaining 4 (????) are in the cytosol... Does anybody know what the truth is? I will research it, but if someone knows offhand please correct at will...

Cheers

See diagram on Porphyrin#In_brief. JFW | T@lk 08:32, 6 November 2005 (UTC)

Drinking blood

This article (on cursory examination) doesn't seem to mention the reason I looked this disorder up... the blood-drinking that may or may not be involved (See [1]). Do some people with this order need/want to drink blood? -GregoryWeir 00:10, 27 January 2006 (UTC)

No, which is why we cite a source debunking the vampirism link by The Straight Dope. Haem does not survive the digestive tract (wow, we'd be able to avoid blood transfusions) and blood drinking is not an adequate treatment for acute porphyria.

Haem arginate and haematin (which are haem analogues) are administered intravenously for the treatment of acute porphyria. The article states that. JFW | T@lk 23:48, 28 January 2006 (UTC)

Vincent and porphyria?? Are you kidding? There are more likely hypotheses.

I know...

I know people with this disease.. they drink blood, then want and as they say, they "need" blood... they cannot be on sun for long time and they are allergic for gold. This people are from Prague.

I think you know vampire-wanna-bes, not real sufferers of the illness.

Are you a vampire troll? JFW | T@lk 08:19, 3 September 2006 (UTC)

I have this condition, I do not have a need or want for any blood at all. I am however very sensitive to light, have EXTREME back pain, EXTREME Vomiting, and my urine turns purple, but normally only during the attacks. This condition did not start effecting me this badly until I became an adult. I can't stand it because the doctors don't know how to treat it, or what to do about it, and I am basically powerless over it as well. Until the day I die, I will be a prisoner of my own body. TheСyndicate 18:30, 2 November 2008 (UTC)

Lipids

This study again confirms that hemin is good in acute porphyria. JFW | T@lk 08:19, 3 September 2006 (UTC)

In reference to my edit

I have been informed that Google does not return any results as Porphyric Haemophilia being another term for Porphyria. While this is true, we can also say that Google is not infallible. In the 1950's, Porphyria (especially Hepatic Porphyria) was sometimes referred to as "Porphyric Haemophilia", based on the way that blood injections were occasionally used to temporarily stabilize the afflicted person. While the diesease is not in reality a Haemophilia at all, this term was used in error for lack of understanding of the disease, especially in a book I have a copy of, "An Encyclopaedia of Obscure Medicine" by Joness Denver, Published by University Books, Inc., 1959.

This, because of the use of this term in Morrowind, is why I added the Disambig at the top. Thank you for your time. ~ Porphyric Hemophiliac § 00:38, 8 September 2006 (UTC)

• Comment: Before you spend precious time searching, I cannot find any other copies of this book anywhere, since it is long out of print. ~ Porphyric Hemophiliac § 00:43, 8 September 2006 (UTC)

Working

I've finally managed to weed out the piles of anecdotal crud once inserted by a porphyrophiliac anonymous editor. What it is now is all that I know about this condition; I will try to reread the Kauppinen review and update the article accordingly.

This article apparently sheds some light (no pun intended) on the history of porphyria. I'll need to locate fulltext with the help of our nice librarians. JFW | T@lk 21:45, 18 October 2006 (UTC)

Recent Vandalism

Apparently, someone vandalized the Porphyria page by erasing the entire page, and putting "I LOVE PIE!!!!" and a bunch of non-Latin symbols. I undid the changes and I would like to cite the last user for vandalism. They were logged in. Someone please check the history for me. Geosultan4 02:52, 6 March 2007 (UTC)

CSI Episode 121 "Justice is Served"

In this episode 121 from the first season, “The Justice is Served”, A woman with phorphyria, is the responsible for the murder of a jogger found mauled in a park by a dog. She tells Grissom that she needed the victim’s liver and other organs, in order to made a nutritional drink against her disease. —The preceding unsigned comment was added by 201.134.69.125 (talk) 19:28, 17 April 2007 (UTC).

Actually it was CSI episode 120 "Justice is Served" but who's counting. -ROMARO- CSI Expert

Werewolf Legends

I agree that the case for vampirism being explained by a porphyria does not stack up because drinking blood would not correct the associated anaemia as previously mentioned .. in fact it could conceivably lead to iron overload. The werewolf legends do fit better ....consider for example persons with Congenital erythropoetic porphyria which goes untreated ....this could lead to

a)loss of mental competence(possibly leading to odd behaviour and vocalisations) b)hypertrichosis c)Severe photosensitivity so sufferers would only come out at night and may have developed an otherwise odd appearance due to light evoked scarring. d)Fluorescent red/brown teeth ( presumably best seen at night under a full moon!) One can envisage a situation in isolated communities in densly forrested areas where consanguinity has increased the likelihood of this autosomal recessive condition occuring.

all speculative of course but certainly worth consideration ... Doctorpete 11:06, 24 May 2007 (UTC)

This might be your opinion, but it would be wrong. Considering that the Vampire legends and the Blood letting had no link with the Porphyric part of the Vampire stories.

They are two separate things. The Porphyric part of the Vampire legends should be completely obvious to anyone, the sunlight part of the stories are really the only part dealing with Porphyria.

The Blood drinking and youth parts of Vampirism had to do with people needing an explanation for why some rulers would drink blood, or kill virgins and also them needing an explanation for why the recently buried people were bloated with blood all over their mouths when uncovered —Preceding unsigned comment added by 68.108.181.98 (talk) 11:15, 26 May 2008 (UTC)

206.217.11.124 (talk) 12:17, 26 October 2009 (UTC) ← I just watched a show about werewolves on animal planet explaining Porphyria as the cause of it explaining many symptoms like: blood lust, purple urin, mental lapses, and excessive hair growth. They also named the medical conditions for Mermaidism, cyclops disease, and some others. They claimed that the blood kept the condition under control. → 206.217.11.124 (talk) 12:17, 26 October 2009 (UTC)

I find it bordering on the ridiculous that the first sentence in the "Vampires and Werewolves" section is tagged as 'citation needed' when the next three sentences cite the very references requested. Is it standard Wikipedia policy to consider immediate following references inapplicable to a previous statement's need for citations? 170.141.177.61 (talk) 22:21, 18 May 2011 (UTC)

False statement.

Personally I'm not sure how to handle the edit for this since I have infact read such criticisms elsewhere and in books.

The article states "The theory also operates on a highly-flawed premise: mainly in regards to a perceived harmful effect sunlight had on vampires. But this is a much more recent innovation in vampire "lore": its origin is from 1922, with the release of vampire movie, Nosferatu, eine Symphonie des Grauens."

However, in Bram Stoker's original Dracula novel published in 1897, the vampire, Dracula, was infact affected by sunlight. His powers were much weaker and he was very vulnerable in sunlight. It didn't kill him, but it was in a sense his kryptonite. Also, there's a prevailing tradition that vampires only come out at night extending as far back as a time when vampires were thought to be merely evil spirits the possess both animate and inanimate things. Anything from a rabid dog to a rusty door latch could be seen as a vampire at one point.

If need be, I can dig out my books from storage to provide citations for this, but it'll take some time. Still, the statement is obviously flawed as anyone who's read Bram Stoker's Dracula will know, 1922 wasn't the start of sunlight being harmful. If anything, it's "Nosferatu" started the sunlight is lethal bit. Even then, historically speaking, Nosferatu and Vampires were two entirely different things. —Preceding unsigned comment added by 24.254.163.150 (talk) 19:33, 24 July 2008 (UTC)

You are correct. If people would just use their heads. In the original Vampire legends, FAR before Bram wrote his book, They would dig up the recently buried corpse of a person to see if they were a Vampire. This had to do with them looking for the body to be bloated with blood around the mouth. Their belief was that the "Vampire" was only active AT NIGHT, and would FEED on sleeping people. Last time I checked, people sleep at night and in order to be in a defenseless state, you either have to be drugged/drunk or asleep. Again the majority of the population slept at night. They dug them up during the day time, then put a stake in them to hold them down. Again, I would like to point out that I have this stupid illness, and I in no way, so far, have had ANY urge to drink blood in ANY way. TheСyndicate 18:46, 2 November 2008 (UTC) —Preceding unsigned comment added by 68.108.188.221 (talk)

Royal family

The following book would appear to be a suitable source for the speculation that members of the Royal family had porphyria. I've only read the reviews, which indicate it specifies several names that are currently unsourced in this article, and the reviews seem to regard it as a serious work. Colin°^Talk 10:11, 1 February 2009 (UTC)

• Hunt, David C.; Röhl, John C G; Warren, Martin (1999). Purple secret: genes, 'madness' and the royal houses of Europe. London: Corgi Books. ISBN 0-552-14550-5.{{cite book}}: CS1 maint: multiple names: authors list (link)

ALAD porphyria

I would like to suggest possible treatment for ALAD porphyria. I was thinking that Lead poisoning causes the same symptoms and probably has had alot more research. I looked up how to treat lead poisoning and it's suggested chelation therapy and vitamin C. I mean, that's something to think about. We really need more research of ALAD and other porphyrias too. Interestedperson (talk) 02:57, 9 February 2009 (UTC)

Relationship between Mary Queen of Scots and George III

On July 15 2008, the article stated that Mary QoS was George III's "grandmother six times removed" – a phrase I do not understand. I looked up the relationship, and edited this to read "first cousin nine times removed". Recently, someone changed this to "great great great great great grandmother", and someone else changed it back.

Today I checked the relationship, and found that "great great great great great grandmother" is in fact correct. I do not know why I got it wrong first time – I guess I followed a different line of relationship. The direct one goes through Sophia of Hanover, great granddaughter of Mary and great great grandmother of George III. I have corrected the article. I offer my apologies to those whom I misled. Maproom (talk) 19:09, 11 March 2009 (UTC)

Serious errors

Just for the record I do not know of any person with Variegate Porphyria with developmental delay and I should know we have 24 sufferers in our family and absolutely no one has any form of developmental delay as a matter of fact they all are highly intelligent from an early age. There is serious problems with this article maybe some one who is a porphyria specialist should edit this page fully.

Thank you —Preceding unsigned comment added by 69.176.161.35 (talk) 06:45, 26 March 2009 (UTC)

Porphyria, Vampires, and Werewolves: The Aetiology of European Metamorphosis Legends

Sincerely I cannot find this book/article anywhere, not even in official David Dolphin's bibiography. —Preceding unsigned comment added by 81.186.232.30 (talk) 19:10, 30 March 2009 (UTC)

Error in porphyria types classification

In the chapter "Signs and symptoms" the Porphyria cutanea tarda (PCT) is reported as acute, but is non acute, and the "ALA Dehydratase Deficiency" is missed within the acute types. Also the links acute-->hepatic and cutaneous-->erythropoietic in the preamble and the subsequent division seems wrong (as far as I know the correct subdivision is "acute" and "non acute") Unfortunately I'm not an expert, therefore I don't feel confortable in modifying this page and I prefer somene else to do it. Jimmi61 (talk) 09:54, 27 November 2009 (UTC)

George III

In the current issue of “The Psychologist” magazine, Peter Garrard, Reader in Neurology the University of Southampton, writes:

“Thanks to a widely publicised series of articles by psychiatrists Ida MacAlpine and Richard Hunter (1966), it has become widely accepted that King George’s bizarre behaviour was due to acute exacerbations of the inherited metabolic illness porphyria. An exhaustive analysis of historical records, however, has revealed that this claim was based on spurious and selective interpretation of contemporary medical and historical sources (Peters & Wilkinson, in press).”- Garrard, P., (2010), “Literature, history and biology”, The Psychologist, Vol 23, No 3, March 2010, pp 262-263. Martinevans123 (talk) 13:26, 23 March 2010 (UTC)

The reference, now published, is this: Peters, Timothy J.; Wilkinson, D. (2010) "King George III and porphyria: a clinical re-examination of the historical evidence", History of Psychiatry 21: 3–19. Martinevans123 (talk) 22:29, 23 March 2010 (UTC)

Images

Could someone upload an humann image of porphyria showing the skin lesions and perhaps one of discoloured urine. These would add a lot of value to the article - the paintings of kings and queens add little I'm afraid.ROxBo (talk) 05:12, 28 May 2010 (UTC)

History

doi:10.1016/S0738-081X(97)00199-5 - Goldberg's history 1998, Clin Derm. JFW | T@lk 03:30, 30 May 2011 (UTC)

Hard to understand

This article is particularly difficult to understand. The pathogenesis section especially "This is not the main problem in the porphyrias" - well what IS the key problem. Cut to the chase more - don't tease us with this. If I understood it I'd rewrite it myself, but I'm certainly not getting the quick answer people look to from Wikipedia at the moment. —Preceding unsigned comment added by 78.145.183.184 (talk) 15:25, 25 July 2008 (UTC)

Oh, how we agree with you! My gf and I are sitting here, having read this article, feeling "so what IS porphyria? Did we miss something or is there no actual list of symptoms, as such. We gather that it is a wide group of different diseases with some kind of common cause, but even so- what is it? What do these things have in common IceDragon64 (talk) 21:06, 15 December 2011 (UTC)

78.145.183.184 (talk) & IceDragon64 (talk) - This has long been a huge peeve of mine, that Wikipedians get carried away writing in dense jargon. It makes articles inaccessible to someone without a doctorate in any given topic. The hover-overs that are now used are helpful, but not a cure-all. When someone reads something they don't understand, the hover info doesn't help, and they jump to a link to an another article that they cannot understand (etc, etc, jump, jump, jump), they tumble down a deep maze-like rabbit hole and leave the site in frustration.

For a long time I have suggested that the initial parts of a technical article be written in plain language and that the in-depth jargon be held for the end for those readers who are truly interested. But I seem to be the only one with this opinion. If Wikipedians made the site more user-friendly, maybe getting donations wouldn't be so hard.

Thank you for your time, Wordreader (talk) 19:43, 2 December 2021 (UTC)

Sunlight and vampires

Just a small thing about vampires being harmed in sunlight being a new development. The film Nosferatu (1922) is supposed to be the first record of a vampire being harmed or destroyed in sunlight. Was wondering if this was any use to anyone in order to create a citation. — Preceding unsigned comment added by 81.141.16.209 (talk) 14:26, 17 March 2012 (UTC)

Vlad III was also said to have suffered from acute porphyria, which may have started the notion that vampires were allergic to sunlight.

Should the circumspect reader now assume the opposite? 178.38.108.161 (talk) 15:40, 12 January 2015 (UTC)

Review in Blood

doi:10.1182/blood-2012-05-423186 is a recent review. JFW | T@lk 10:01, 2 December 2012 (UTC)

British/Irish national guidelines (http://bipnet.org.uk/index.php/bipnet-clinical-guidelines/management-of-acute-porphyria.html). JFW | T@lk 15:09, 10 January 2013 (UTC)

Case series (108 pts) - diagnostic delay can be a decade doi:10.1016/j.amjmed.2014.06.036. Needs a secondary source for backup, but very illustrative... JFW | T@lk 09:05, 4 December 2014 (UTC)

Wikipedia needs page/section regarding Homozygous Acute Intermittent Porphyria please

Hello, I am a mother of a child with Homozygous Acute Intermittent Porphyria (AIP). She is the only known case in the United States with this disease to my knowledge. Homozygous refers to two gene mutations of the HMBS gene vs just one (heterozygous). People with AIP as described in the Acute Intermittant Porphyria wiki page and the general Porphyria page only have one gene mutation. I have not been able to find ANY online published information either on Wikipedia or other similar sources that would describe the Homozygous version of the disease, its symptoms, its treatments, its prognosis, etc with the exception of pubmed. I think its critical for families who have a child with this disease in the future to have access to information about this disease,in Wikipedia and other accessible and widely used places. Before my daughter was diagnosed, we spent 2 years searching through reams of online information to try to figure out what her disease was. Porphyria did NOT come up because the symptoms of Homozygous porphyria vs heterozygous porphyria are DIFFERENT. Had we been able to diagnose her earlier than we did perhaps her outcome could have been better. At the very least we would not have had to drag her around the country to doctors of every possible specialty who were also stumped. My goal in writing this talk page is to see if anyone would be willing to create a page or section regarding Homozygous AIP. I am not a Wikipedia contributor and I am probably not qualified to do it myself (I wouldn't know where to start). But I know just about everything about the disease and I know of the papers that have been published about it (just a few). I could certainly be a consultant to start the page. In other words, I would really like this disease to be known and documented but I really do not know how to get it done. Any help you can provide could ultimately save another child's life in the future, especially as gene therapies become reality in the next many years. Thank you Cmaestas1970 (talk) 18:58, 26 August 2016 (UTC)

Cmaestas1970 (talk) - This article touches on HAIP. If this is not enough, perhaps you could begin editing articles, too. There is a steep learning curve here on Wikipedia, I know, but you might find it rewarding to meet your goal. https://wiki.riteme.site/wiki/Hereditary_coproporphyria

All the best to you and your child, Wordreader (talk) 19:58, 2 December 2021 (UTC)

Updated review

doi:10.1111/bjh.14459 JFW | T@lk 16:06, 22 February 2017 (UTC)

Text

This text was added "The most frequent type of porphyria is porphyria cutanea tarda (PCT), which manifests solely with skin complaints and is usually sporadic."

Ref however says "Most porphyrias are inherited disorders"... "For example, porphyria cutanea tarda is most common in the United States, and variegate porphyria is most common in South America."..."Porphyria cutanea tarda is usually an acquired disorder"

So it is not saying that PCT is the most common globally. Doc James (talk · contribs · email) 20:03, 26 August 2017 (UTC)

Sorry, I assumed the refs would be comprehensive, I shouldn't have. Here are three sources that do say it is the most common:

• https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1820519/
• https://www.ncbi.nlm.nih.gov/pubmed/18093456
• https://www.ncbi.nlm.nih.gov/pubmed/28321838

As for hypertension and tachycardia as manifestations of acute attacks here are two sources:

• http://emedicine.medscape.com/article/957604-clinical#showall
• https://www.ncbi.nlm.nih.gov/pubmed/27982422

Fuse809 (contribs · email · talk · uploads) 07:49, 27 August 2017 (UTC)

This references looks good https://www.ncbi.nlm.nih.gov/pubmed/?term=27982422 Doc James (talk · contribs · email) 08:06, 27 August 2017 (UTC)

NEJM

doi:10.1056/NEJMra1608634 JFW | T@lk 08:51, 31 August 2017 (UTC)