Talk:Fibrodysplasia ossificans progressiva

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Statistics
This site says 2,500 have been reported (1 in 2,000,000) to date. The most recent date is April 23, 2006.

http://www.usbjd.org/projects/project_op.cfm?dirID=142

Stovetopcookies 08:35, 16 May 2006 (UTC)

Site is incorrect. Number is based on projection based on world population. Registry maintained by IFOPA is considerably less. —Preceding unsigned comment added by 70.123.135.58 (talk) 05:58, 21 July 2008 (UTC)

Qwantz
This disease was features in today's Qwantz would it be appropriate to create a Popular Culture section and mention it?

No. I came here because of the mention in Qwantz as well, but I don't think that nearly relevantNjerseyguy 20:20, 14 January 2007 (UTC).

Myositis ossificans
The article on myositis ossificans says that the ossification in the progressiva type of myositis ossificans (which this article refers to as fibrodysplasia ossificans progressiva) does not require injury, and develops in a predictable pattern, which seems to contradict this article. Can anyone help clear this up? Dancter 22:55, 9 June 2006 (UTC)


 * From what I remember from a friend that has FOP is that ossification can both occur because of injury, but injury does not always result in ossification and can also happen without an apparent cause. It also seems to vary somewhat from case to case with ossification occurring at vary different rates from person to person. Lonjers 01:24, 22 March 2007 (UTC)


 * My concern is that terminology may be used imprecisely, as it doesn't seem that the distinction between FOP and nonhereditary myositis ossificans is made clear among the two articles. I've tagged both with contradict-other tags to draw a little more attention to this. Dancter 04:44, 22 June 2007 (UTC)


 * Of course FOP develops in a highly predictable manner. I quote Thomas Maeder, author of Children of Psychiatrists: "The researchers discovered that the age at which ossification began varied from one person to the next, but the sequence of joint involvement was almost always the same: first the neck and spine, then the shoulders, the hips and elbows, the knees and wrists, the ankles, and finally the jaw. Back to front, head to tail, trunk to appendages, proximal to distal—the pattern was hauntingly familiar, reminiscent of the sequence of endochondral bone formation in the embryo. The embryo models its skeleton by condensing undifferentiated mesenchyme cells into cartilage and then bone. In some mysterious and profoundly disturbing way the FOP body was recruiting existing connective tissue and transforming it into bone, bone that often retained the shape of the muscles or ligaments that it had once been". The Atlantic, 1992. So, yes, it is predictable. Emilio [[Image:Emisign2.jpg|37px]] 16:02, 12 February 2008 (UTC)


 * I'm largely ignorant on this, so it's still a bit confusing to me, as a layman. This article characterizes the disorder by fibrous tissue becoming ossified "when damaged", but doesn't clearly address the claim in the other article about ossification occuring "without injury". That it develops in a predictable fashion would not in itself preclude the ossifications from having been precipitated by fibrous tissue damage, or "injury". I recognize that this may be a semantic issue, but it's one that tripped me up, and I suspect may have tripped up others who are coming to these articles to first educate themselves on these conditions. Since you seem to be very knowledgeable about FOP, if you can edit the articles to clarify this, it would be very much appreciated. Dancter (talk) 18:34, 14 February 2008 (UTC)


 * I recall the condition being that it could occur on its own, but injury would often stimulate the progression of the condition (tarkana 4/2/08)


 * The definition of "injury" certainly comes into play. I happen to have FOP. My jaw fused likely due to a dental procedure. My knee (which happened AFTER my jaw) was due to an incident in Hawaii involving a minibus with a rental car company. My right leg is now going through an episode that does not correlate with any remembered injury or strain. (steve 5/27/08)

A quick but much better source to check out on emedicie.medscape.com re fibrodysplasia ossificans progressiva or the hereditary form of myositis ossificans : http://emedicine.medscape.com/article/1007104-overview. —Preceding unsigned comment added by Kristalywiki (talk • contribs) 06:22, 13 March 2009 (UTC)

Contradictory info from Discovery Health
Note that the info from Discovery disagrees with the 'Statistics' above. Until someone finds a published source, please stop reverting unconfirmable information you saw on cable. Cable show are not good sources for an encyclopedia. —The preceding unsigned comment was added by Lord Kelvin (talk • contribs) 01:17, 22 June 2006 (UTC)

In the study by Gannon (entitled "Mast Cell involvment in fibrodysplasia ossificans progressiva") formation of lesions in this disease are linked to activation of inflammitory mast cells. This means any injury resulting in inflammation and therefore activation of mast cells can trigger the formation of bone. This disease is not however caused by injury and has usually been found to follow a classical endochondral ossification pathway found in developing embryo. For more info read the article "Transgenic Mice Overexpressing BMP4 Develop a Fibrodysplasia Ossificans Progressiva-Like Phenotype" by Lixin Kan. —Preceding unsigned comment added by 134.50.25.59 (talk) 23:46, 26 September 2007 (UTC)

misspelling of title
i have seen this spelled fibrodysplasia ossificans progessiva,

progessiva instead of progressiva. can anyone verify this?

Jbpanther20 00:00, 29 August 2006 (UTC)jbpanther20

Sounds to me like it's simply a misspelling.WizardofOskemen 22:24, 19 October 2006 (UTC)

Yea, "progressiva" refers to the progressive nature of the disease. See the International Fibrodysplasia Ossificans Progressiva Association webpage. Njerseyguy 20:23, 14 January 2007 (UTC)

Excellent picture.
A haunting picture of Harry Eastwick appears side by side with his skeleton (post mortem) is available here (google image frame. The original page is here. Anyone with some time might want to add the photo or at least link to it. Njerseyguy

On a side note, I can't spell worth a damn Njerseyguy 20:27, 14 January 2007 (UTC)

Spelling corrected and noted that the first shot is not a cadever

70.123.129.246 (talk) 22:34, 20 January 2008 (UTC)Steve Eichner70.123.129.246 (talk) 22:34, 20 January 2008 (UTC)

It can be seen full size here. Captain Gamma (talk) 18:44, 16 April 2009 (UTC)

^ ^^ ^^^ ^^^^^ NEVER MIND. all the image links above are dead. there, i saved you 5 minutes of life. Cramyourspam (talk) 21:17, 22 July 2020 (UTC)

Mr. Eastlack's Case
The "cases" section of this article starts talking about someone named "Mr. Eastlack." The second paragraph starts referring to someone who can only move their lips, but never says their name. The third paragraph mentions a "Mr. Eastlack." Is Mr. Eastlack the person from the second paragraph? Does Mr. Eastlack have a full name? Is he worth mentioning? Please, REWRITE THIS SECTION.

(No, I'm not a real doctor)

Dr. Mordecai 01:48, 23 March 2007 (UTC)

Harry Eastlack is the individual's name. The current Wiki entry inidicates this

70.123.129.246 (talk) 22:35, 20 January 2008 (UTC)Steve Eichner70.123.129.246 (talk) 22:35, 20 January 2008 (UTC)

Documentary on FOP
Discovery Health Channel ran a documentary on FOP a few years ago, titled "Skeleton Key". It opened with video of Eastlack's deformed skeleton.

Referrences
The entire "Cases" section doesn't have any referrences. I would suggest citing the Mutter museum website, which has a brief description of the specimen and an image, but as I am inexperienced in Wiki formatting I'll leave that to someone else. The part about accounts in the 1800s might need to be removed--there's accounts of human petrification in the Bible, for one thing, and for another without any sources at all this seems irrelevant. —Preceding unsigned comment added by 66.245.93.148 (talk) 22:02, 29 January 2008 (UTC)

Injuries from falling...
"Injuries from falling can provoke the bone growth and should be avoided." Is this really necessary? I think 10 out of 10 doctors recommend not falling, even for those not affected by FOP. -- MacAddct &#xF8FF; 1984 (talk &#149; contribs) 15:15, 5 May 2008 (UTC)


 * The important part of the sentence is "Injuries from falling can provoke bone growth". This is an important statement since the disease affects children in an age range where falls and horseplay is quite common and considered normal behavior.  Children with FOP can not be allowed to 'play' like this as it increases the chance of injuries, which leads to bone growth.   -- ShinmaWa(talk) 14:48, 27 June 2008 (UTC)

Why can't they destroy the BMP?
I don't understand why doctors can't just take some recombinant rat BMP4, mix it up in an adjuvant, and inject it into these people until they develop an autoimmune response. Is anyone working on this? Wnt (talk) 01:36, 7 May 2009 (UTC)

Edit request
Please change the following sentence in the "Symptoms" paragraph: "The gene that causes ossification is normally deactivated after a fetus' bones are formed in the nutsack, but in patients with FOP, the gene keeps working." The word "nutsack" should be changed to "uterus."

Cchen91765 (talk) 16:01, 28 March 2010 (UTC)

Done Welcome and thanks for pointing this out. I returned the text to 'womb', since that was the text prior to the vandalism. If you would prefer 'uterus', let me know and I will change it. Celestra (talk) 16:33, 28 March 2010 (UTC)

What happened to the picture of Harry Eastlack's skeleton? 71.192.108.214 (talk) 00:40, 23 June 2011 (UTC)

Can someone find a better figure to use under genetics. To someone unfamiliar with that type of spectra like myself I found it very confusing that the peak colors didn’t match their assigned nucleotide and the most important base just looks like noise or a null peak. There are much more elegant and intuitive ways to visualize a point mutation and as a common phenomenon a more appropriate visual probably either already exists or would just take editing a couple letters.

Would a bone marrow transplant work?
In the "Skeleton Key" documentary it was stated that the white blood cells deposit BMP4 into sites of injury, which promotes conversion of tissue to bone. Seems to me the obvious treatment is to "nuke and pave" by destroying the source of the malfunctioning lymphocytes and replacing it, same as is done for other disorders caused by bad bone marrow. As has been done with leukemia, a method of sorting and culturing marrow cells without the defect would allow an autograft and no need for anti rejection drugs. Once the progression is stopped it woul be possible to do surgery to remove the bone growths. 174.145.244.98 (talk) 11:54, 4 March 2012 (UTC)

WP:MEDRS
This article has severe sourcing issues. News articles etc are not suitable. All medical content on wikipedia should be sourced per WP:MEDRS. I will tag the sources that need to go for now. Lesion ( talk ) 10:58, 26 August 2013 (UTC)

Do not link to ifopa.org
The IFOPA website has a problem, and I have removed all links to it from Wikipedia until the issue is resolved. See Wikipedia talk:WikiProject Spam/2013 Archive Jan 1 for details. --Guy Macon (talk) 08:14, 8 November 2015 (UTC)

The ifopa’s website issue has long been resolved Eichners (talk) 06:06, 8 July 2021 (UTC)

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