Talk:Epidermolysis bullosa

Conflicting Information-
From the article:
 * Of these cases, approximately 92% are EBS, 5% are DEB, 1% are JEB

that would indicate that DEB is more popular than JEB. but then one sentence later:
 * Carrier frequency ranges from 1 in 333 for Junctional, to 1 in 450 for Dystrophic.

that would indicate Junctional is more popular than Dystrophic.

Which is true? Jkister (talk) 07:59, 25 January 2012 (UTC)

Carrier frequency does not equal actual occurrence (prevalence/incidence) of the disorder, only the estimated number of people who carry a mutation that would lead to the disease. Since EB is frequently inherited in an autosomal recessive fashion, carrier status is likely to be more prevalent than those that are actively affected.

Another reason for the discrepancy could be that dystrophic EB had two main subtypes - dominant and recessive. By definition, those people with a mutation that causes Dominant Dystrophic EB are affected, not carriers, since DDEB in inherited in an autosomal dominant fashion. There are no carriers in DDEB. Recessive Dystrophic EB, however, does have carriers. This distinction is not explored in the article, but these two statements are not necessarily contradictory.

I am, however, not confident that the numbers provided are accurate, anyway. This page on the Dystrophic Epidermolysis Bullosa Research Association of America (DebRA America, a support organization for people affected by all types of EB) explores incidence and prevalence of the various subtypes of EB: http://debra.org/abouteb.

205.142.197.104 (talk) 17:39, 13 June 2013 (UTC)N

Etymology? From Greek epidermis and lysis. 58.164.140.1 (talk) 03:54, 25 October 2014 (UTC)

Epidemiology conflict: incidence 50 diagnosis / million birth vs prevalence 9 million. Assuming a world population of 7.5 billion, incidence implies 7B * (50/1M) = prevalence of 350, that is, a much rarer disease. What's going on? --- talk —Preceding undated comment added 21:49, 1 September 2015 (UTC)

Previous discussions without headers
I think it would be a good idea to get everyone's views on EB after watching "The Boy's Whose Skin Fell Off." The Jonny Kennedy documentary.

I am a scientist. I think its offensive to refer to non-specialists as "laymen". It certainly carries negative connotations.

External links and page protection
I have semi-protected the page as a result of the edit war over the inclusion of two new external links. I'm sorry, but I have better things to do than block the parties on both sides of the edit war as a result of the conduct here.

If anybody would like to engage in a civil discussion here about the merits or flaws of the links, I welcome it here. While I hold good faith in my fellows editors, I'll be clear: if you want to talk about something other than the matter at hand—the merits of the links or how WP:EL and related policies apply to them—take it somewhere else. I would rather get the consensus of involved editors than make a judgment based on my interpretation of WP:EL, but at the same time, I want evidence and reasonable logic to follow, not just a show of hands. —C.Fred (talk) 02:52, 9 July 2007 (UTC)


 * Per Manual_of_Style_(medicine-related_articles), it would probably be best to remove all the support-group links, and replace them with a link to --Arcadian 03:54, 9 July 2007 (UTC)


 * "WALK A MILE IN MY SHOES" EB Relay-Rally - Our community's inaugural "National Epidermolysis Bullosa Awareness Week" celebration, starting in New York City, and making its way across America to Stanford, California! Please join us! - Fails EL [unrelated to subject matter] and NPOV [which could be edited to be more so, but shouldn't, seeing as the link shouldn't be there]. I'll stop removing it until we've reached some consensus [provided, of course, re-adding user is interested in that]. -SkylineBNR34 07:04, 9 July 2007 (UTC)

Hi, Gena Gruschovnik here, owner of the EB "Walk a Mile" website, www.ebrelay.org. This site is not only about the Relay for Epidermolysis Bullosa awareness, it is also a comprehensive information site without the personal opinions; this information is factual and the facts were provided by the same doctors you have listed as References. An educational video podcast is to be posted there shortly, also. There is additional information about how to help people with EB.

In this way, www.ebrelay.org is no different from EB Friends, EB InfoWorld or Through the Eyes of a Patient - the only difference is that it's action-oriented toward awareness, and this EB Awareness Week was approved by Congress and the Senate to foster understanding about this rare genetic disorder. If you would like me to change the description, I would be happy to do so. I don't check back here often and have stayed out of this "war," so please email me at gena@ebrelay.org to let me know what I can do to ensure the "Walk a Mile" site remains. I would also like to add DebRA Canada's website once editing is allowed, for which I am Director of Awareness & Education. Thank you. (Liberty1960 01:57, 11 July 2007 (UTC))


 * The link and summary are an advert. Wikipedia is not an advertisement hoarding.  The charitable status of the event is irrelevant, have you any idea how many charitable events are being promoted in the world at any one time? Sorry, no, find some other place to promote your event. Guy (Help!) 19:47, 15 July 2007 (UTC)

External links part 2
I think that, by this point, they haven't quite realized that the links are not necessary and are being removed on sight. Would anyone object to the links being added to AntiSpamBot for automated removal? It's a less drastic approach than the local spam blacklist, and would make it a lot easier to keep the article clean. Shadow1 (talk) 22:03, 18 July 2007 (UTC)


 * Since it's becoming a persistent problem, yes, I think that's a good solution. —C.Fred (talk) 23:52, 18 July 2007 (UTC)


 * Given that a blocked a repeat-offender IP address, maybe it's time to just put it on the local spam blacklist after all. —C.Fred (talk) 03:50, 16 August 2007 (UTC)

dissapointed
I am bummed that because of this war. the spam bot is set to remove EBMRF. The people at BMRF had nothing to do in this link war and they should be left alone!

I hope both parties will be respectful and allow both links to be there. I understand there is a difference in opinions I respect that.

Thank you for reading this,

Linnet —The preceding unsigned comment was added by Specialmum99 (talk • contribs).
 * — Specialmum99 (talk • contribs) has made few or no other edits outside this topic.


 * But the point is, there's no reason for the links to be there in the first place. It's essentially advertising to attract visitors to the sites; they don't offer any useful information about the disease itself. Shadow1  (talk) 15:48, 24 July 2007 (UTC)


 * On a by-site basis, here's my read on the three sites.
 * EBMRF: Does include a link to a Stanford report on research updates. Also includes links for items for sale with nominal donations to EBMRF. Prominent solicitation for donations on front page. To be considered #4, to be avoided #3 and #5. Stanford report could be otherwise linked. Fails WP:EL.
 * Walk a Mile Relay-Rally: Does not provide unique resources (info about EB) that the article, in featured state, would not have. Appears included in article to promote the relay-rally. To be avoided #1, #3: fails WP:EL.
 * EBAN: Does not provide unique resources. To be avoided #1: fails WP:EL.
 * Those are my interpretations on the links.
 * Prior discussion indicates that consensus among other editors is that the links should not be included. I'm open to continued discussion, but unless consensus can be reached that the links contribute meaningfully to the article and are valid under the External links guidelines, the links shall not be included. —C.Fred (talk) 16:55, 24 July 2007 (UTC)

Add EBMRF Research Update link?
I fully understand Wiki's policy on having sites that solicit. According to C.FRED's last sentence he is open to discussion as to why the EBMRF should be returned to this article. While the EBMRF is indeed a non profit organization, they are THE MOST important providers of research and new information regarding this disease. They are a non profit because the US Government does not fund research for such a rare disease and they need to raise the money somehow. Yes, their home page shows some advertising for a necklace being sold to raise money for this research and I see how you thought it was just a fundraisng organization. The truth is, much of the information provided in the article came from the EBMRF's research. The EBMRF was linked to this page for a very long time before the edit war began. Looking through the edit history it seems to have been perpetuated by the owner of EB INFO WORLD and EBAN and it amazes me how persistant she was in insisting her websites be included after she was told her websites did not add any further information regarding the facts behind EB. Through all of this the EBMRF was innocently caught up in the edit war. The EBMRF works closely with DebRA and NIH (both of whom are rightfully included as external links) and they actually provide these 2 organizations with much of their information.

The EBMRF's website is the only place on the internet where the latest information coming out of the Department of Dermatology at Stanford University is provided.

I offer you this alternative to linking the EBMRF at their home page. The link http://www.ebkids.org/researchupdate.html takes you to the page that will provide this information for the people using this article. There are no ads on this page.

PLEASE consider adding this link and allowing the EBMRF to be part of this article which they helped write in the first place. Thank you, Dr. Amy Greene DrGreeneDrGreene


 * Endorse. First, a comment on due diligence. The talk comment above is DrGreene's first edit to the Wikipedia. A Wikipedia search, even on "Amy Greene dermatology", turned up nothing useful. That said, a search on "Eugene Bauer" reveals not only that he used to head Stanford's medical center but also that he's been involved with some companies that develop commercial products for skin conditions. So, I'll grant that he's an expert on the subject. The update mentioned above is written neutrally, does not endorse a product, and presents neutral commentary on the investigation. I did not (albeit in a somewhat cursory search) locate any other pages presenting information on the trials. If there are no objections from other editors, I say add the link to that subpage. —C.Fred (talk) 12:43, 12 August 2007 (UTC)

Thank you C.FRED, for the comment on my talk page and the comment above. - Dr. Amy Greene talk  18:48, 12 August 2007

Title of the article
I think the correct name of the article would be hereditary epidermolysis bullosa. Not every epidermolysis bullosa is hereditary. --Eleassar my talk 09:55, 5 February 2008 (UTC)

Clinical trial
The information there is dated, now. At least 6 transplants have been done. And the California baby died during preparation for the transplant.

http://www.sacbee.com/ourregion/story/1013195.html

http://www.sacbee.com/ourregion/story/1047623.html

Don't have a good source for the number 6 - came from a website of someone who's child had the procedure, and I know that can't be usable source here. 216.226.176.142 (talk) 19:17, 19 May 2009 (UTC)

find-a-cure foundation
Would it be against some sort of Wikipedia "no endorsements of commercial / nonprofit entities" clause (or otherwise offtopic) to add a sentence or two about this kind of foundation & their work? Here is the relevant passage in the article:


 * "For Alexander Silver, the motivation is his 4-year-old son, Jackson. Silver, a partner at New York-based private-investment firm P2 Capital Partners, LLC, started the Jackson Gabriel Silver Foundation in 2010 to find a treatment for a rare genetic condition called epidermolysis bullosa. [...]


 * Silver, 34, who has raised more than $400,000 since 2008 and aims for $10 million or more, predicts a good treatment will come if money flows without red tape to the right projects. His foundation -- along with one run by Paul Joseph, a private- wealth broker at Morgan Stanley Smith Barney LLC whose 7-year- old son has the condition -- has backed work at the University of Southern California in Los Angeles. The research has produced a potential drug.


 * The approach has garnered $26 million in venture capital from Boston-based Third Rock Ventures to form a company and move the therapy in human trials."
 * Mogul Lures Novartis in Race to Cure Daughter by Robert Langreth and Alex Nussbaum. Sept. 7, 2011.

Wingman4l7 (talk) 04:54, 8 September 2011 (UTC)

I just left this here
http://www.dailymail.co.uk/health/article-2040918/The-little-boy-hugged-rare-condition-means-break-blisters.html

--Roto2esdios (talk) 18:57, 24 September 2011 (UTC)

Meaningless text
The article happily gets underway with the statement: Of these cases, approximately 92% are EBS, 5% are DEB, 1% are JEB, and 2% are unclassified. What are these orphaned initialisations supposed to mean? Surely it's not up to a dummy like me to point out that without context this is meaningless drivel? 123.185.76.209 (talk) 14:14, 31 October 2011 (UTC)

External links modified
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External links modified
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 * Added archive https://web.archive.org/web/20150116025043/http://www.niams.nih.gov/Health_Info/Epidermolysis_Bullosa/default.asp to http://niams.nih.gov/Health_Info/Epidermolysis_Bullosa/default.asp

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LAMB3 gene therapy
Since it may be unsuited for the main article, here's some additional info for the talk page:
 * https://www.ncbi.nlm.nih.gov/pubmed/30122422
 * https://www.scientificamerican.com/article/massive-skin-replacement-saves-childs-life/
 * https://www.theatlantic.com/science/archive/2017/11/epidermolysis-bullosa-new-skin/545291/

Cotton Wool babies people born 1960's?
What did the Australian Doctors know in the 60's & what treatments where given in the 1969's 1970's in Sydney ? What where the known amount of cases & what was the Life expectancy? If anyone can answer these questions I'd be very grateful. Also who is Western Australia & Australia's Leading Specialists in this field? Thankyou. Ann Matthiessen (talk) 05:15, 21 March 2019 (UTC)

Image set
I just came across this image set from the Wiki Science Competition 2017. Are any of these suitable for illustrating the article? What are people's thoughts? T.Shafee(Evo &#38; Evo)talk 05:22, 14 November 2019 (UTC)

Summary Panel - What Does Frequency Mean?
In the summary panel, a number of 500,000 is given. Is this the number of sufferers in the world, in the US? It would be more helpful if that were made clear. As it is now you have to follow the citation and read quite a long way down the article to discover that the 500,000 is the number of people in the world living with EB.