Talk:Cystic fibrosis/Archive 1

"65 Roses" Story

The link provided in the references article leads to a login page, however, I found the correct link on the same site. If someone would update it, I'd be grateful =D

Link: http://www.cff.org/about_cystic_fibrosis/65_Roses/

--JJMan 19:24, 5 October 2006 (UTC)

History section

Hi, congrats for making it FA. I just noticed in this article that the history section is located at the bottom. In other articles, this section is usually just after the brief description on what the article is about. Should't this be changed to the current "standard" in Wikipedia? Thanks.

Vancomycin/Aminoglycosides

• Vancomycin and aminoglycosides bear no structural or functional similarities. They differ in mechanism of action, spectrum, structure, derivation - I fail to see the reason for reverting my change. --Jmmurphy 15:33, 7 April 2006 (UTC)

Given the fact that it was an edit by an anon. user I reverted it. Vancomycin as far as I've been told is an aminoglycoside. As I had had no response back from an MD, I felt justified in reverting it, thank you for creating an account and fixing the information. --ImmortalGoddezz 16:12, 7 April 2006 (UTC)

I often neglect to log in when away from my own computer, so I understand the confusion. I'm not an MD, but I can assure you that Vancomycin is unrelated to the aminoglycoside class of antibiotics. --Jmmurphy 00:13, 8 April 2006 (UTC)

Hi, all (and Silvermask, hah!). I was wondering if I could revamp this article a bit to improve its flow. There's a lot of information presented here, and I would like to make it an easier read by rearranging the paragraphs and creating some smoother transitions.
I just wanted to ask your opinions before fiddling. :} --Aubrey Osiris 16:46, 15 Aug 2004 (UTC)

I was thinking the article is in need of that myself. --Silvermask 23:15, Aug 16, 2004 (UTC)

I at least divided and organized it; also added lots more info & photo. paragraphs may need to be re-worked to fit the structure better, though. Still need some work. --TexasDex 01:27, Sep 17, 2004 (UTC)

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"Due to advances in medical treatment, the median life expectancy of a newborn with cystic fibrosis at gene therapy were initially successful, but failed to produce acceptable long-term results."

That sentence makes no sense to me. Perhaps someone who knows what it is trying to say could rewrite it for clarification. --Ilyusha

The improved life expectancy is not due to gene therapy. It's better physiotherapy, antibiotics and occasionally lung transplants. JFW | T@lk 14:07, 5 May 2005 (UTC)

Evolution

Someone inserted something interesting about evolutionary advantage in CFTR carriers, with homozygosity as a tradeoff. I have backed this up with some references. Perhaps this one should also be inserted, but I do not want to overburden the references section. Any thoughts. JFW | T@lk 14:07, 5 May 2005 (UTC)

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Fertility

"In CF, 98% of men with are sterile due to complications..."

I believe this should be changed. 98% is the most commonly accepted percentage for infertility of male CFers when it is in between 92% - and 98%. 'Or up to 98% of males are infertile.' I would change this myself but at the moment I do not have the references that I can directly cite to in front of me. --ImmortalGoddezz 14:03, 24 August 2005 (UTC)

Typhus resistance

Someone edited the genetic history and the speculative theory about d508 conferring resistance to diarrhoeal illness[1]. The contributor cites some papers but does not reference them. Does anyone know the Pier 1994 & 1998 papers, and could that same person insert a full academic reference? JFW | T@lk 15:57, 13 September 2005 (UTC)

Fertility [UPDATED]

The fertility section is not.. exactly right... I'm changing it and adding references. I'm also linking to a page that deals with Cystic Fibrosis male infertility. I'd think that it would be ok to link to it since it provides information for infertile CF males. If I'm wrong about that please let me know. -ImmortalGoddezz 23:57, 21 November 2005 (UTC)

what is the correct information regarding Fertility for women?Poweroverwhelming 17:23, 11 August 2006 (UTC)

20% are infertile (the article is correct, this comment is old) InvictaHOG 17:26, 11 August 2006 (UTC)

WRONG.

Even the article quoted does not support the 20% figure. In fact, a direct quotation is: "Because of abnormalities of the cervical mucus and anovulatory cycles, fertility may be reduced for some women who have CF.37 38 Our study focused on completed pregnancies, and, consequently, we do not have complete data on infertility in our female CF population." The full text to this article can be found at: http://www.chestjournal.org/cgi/content/full/118/1/85 . The importance of recognizing the high likelihood of female fertility in cystic fibrosis is addressed in an article at: http://adc.bmj.com/cgi/content/full/88/3/265?ijkey=75adcaa78275d6ff0330f61cf84c005ae84a63ab which includes the statement "While women with CF are as likely to be sexually active as other young women, they are less likely to use contraception"

A more recent article ( http://humrep.oxfordjournals.org/cgi/content/full/19/10/2238 )directly disputes this claim: In terms of fertility, older studies have quoted poor figures, with fertility at <20% among female CF sufferers (Rodgers et al., 2000). This article goes so far as to say: "). There appears to be little evidence from more recent data to suggest that healthy women with CF have fertility problems apart from differences in the quality of cervical mucus ".

An additional article directly rebuts the old claims about female infertility in cystic fibrosis ( http://thorax.bmj.com/cgi/content/full/56/8/649?ijkey=aa40f64776d06cfceeaef212b6b981b45a8d990c&keytype2=tf_ipsecsha )

A very clear and simple discussion of how female infertility needs to be reconsidered can be found at: http://www.bmj.com/cgi/content/full/313/7065/1095?ijkey=7b5b4f7f3293b89cb3edf1fe9dfb76a964fd9a2e&keytype2=tf_ipsecsha .

• http://www.dnadirect.com/resource/conditions/cystic_fibrosis/faqs_CF_infertility.jsp

"Women with CF may experience reduced fertility and pregnancy complications, mainly due to the severity of the disease. However, these genetic changes are not known to have a similar impact on fertility as seen in men. So, while genetic testing guidelines recommend that CF screening be offered as part of the evaluation for male infertility, screening is not currently recommended as part of a female infertility work-up."

This is not meant to deny that there are female individuals with CF who have infertility -- an article dealing with a case study can be read at: http://humrep.oxfordjournals.org/cgi/content/full/15/10/2152?ijkey=683b0180a4a1d12cd705b6b181660e9be3e9fb40 . However, including blanket fertility as a major effect of CF is distracting from the actual effects of the disease.

additional full text articles: http://thorax.bmj.com/cgi/content/full/55/8/672

Fertility: one added

http://www.chestjournal.org/cgi/content/full/125/1_suppl/1S "In contrast, the woman with CF has a normal reproductive anatomy. It is often stated that women with CF are less fertile than healthy women253 254 ; however, > 100 women with CF become pregnant every year.2 If fertility in women with CF is decreased, it is unclear whether this is related to their general health status or is related to abnormalities of the cervical mucus. The rheology of the cervical mucus is different in the woman with CF compared to the nonaffected woman. There is lower water content and no thinning at ovulation.253 255 " —The preceding unsigned comment was added by 209.99.72.189 (talk) 22:27, 7 December 2006 (UTC).

Another: Findings include: many women with CF underestimate their fertility, some women with cf do not use birth control appropriately due to this mistaken perception of their fertility, and unplanned pregnancies have resulted as an effect of these falicious beliefs about female CF-related infertility. "this study underscores a need for women with CF to have more accurate information about their potential fertility" -- wikipedia can be a part of defeating this myth about CF health. http://www.andrologyjournal.org/cgi/reprint/21/6/809.pdf

Expert tag

There is an anon editor changing "low" to "high" in one sentence and making some other assertions. I don't know much about this topic so I don't know which is correct. I have asked the anon to cite the source for this info but could use a more knowledgeable pair of eyes... (ESkog)^(Talk) 23:17, 15 December 2005 (UTC)

• Never mind, got some research help in #wikipedia. (ESkog)^(Talk) 23:27, 15 December 2005 (UTC)

New Pictures?

Not that the girl in the picture doesn't look lovely, but it's a webcam picture and you can only see the top half of the Vest that she's using. Perhaps it's time to update the photograph? Get a picture of the Vest or perhaps an aerosol treatment machine? Box of medications? Something of the like.. Just a thought/suggestion. --ImmortalGoddezz 06:10, 16 January 2006 (UTC)

The picture is kind of sad. Can't we find a picture of a different person?-72.78.53.72 00:30, 6 July 2006 (UTC)

No. Why? Because this is a sad disease. The median age of survival for this disease is into the 30's so basically what you see is what you get. It doesn't really get any better than this, and this shows the disease as it is. --ImmortalGoddezz 01:33, 6 July 2006 (UTC)

A lot of work to do

The article is nice, but doesn't come close to covering everything that it should! I will work on getting some more images. There's no mention of sinusitis, MAC, ABPA (which, last I checked, didn't have an article yet but which I plan on writing this weekend), fungal infections, intestinal obstruction, liver failure, etc. Basically, the article needs to conform to the template with an expansion of the clinical manifestations InvictaHOG 05:48, 10 February 2006 (UTC)

If images are needed I can get pictures of an IPV machine, regular aerosol treatment machine, Pari nebs, Pulmozyme/Tobi/Albuterol boxes, clubbing of the fingers, the vest, g-tube picture (possibly) etc. Just let me know what is needed. --ImmortalGoddezz 06:04, 10 February 2006 (UTC)

Well, that's the type of thing that I was planning on taking pictures of myself, so if you have them readily available its easier than me asking the CF patient I admitted tonight if I could take pictures of hers! I think that the Pulmozyme/Tobi nebs, vest, and maybe some x-rays would be nice and most distinctive InvictaHOG 07:23, 10 February 2006 (UTC)

Most of the stuff I have readily available to take pictures of. X-rays I'm not sure I can get ahold of... post double lung tx no prob, but pre-lung tx I'd have to see about.. As for P-zyme/Tobi and vest I'll get those and upload them tomorrow and whatever else I can do. I'll post wiki links of the pictures on the talk page, they can be decided upon and added to the CF article. --ImmortalGoddezz 08:05, 10 February 2006 (UTC)

Some pictures, as of so far I've been unsuccessful in getting any of the other photos. Eh, what can you do. Image:CFIPVmachine.jpg, Image:CFnebulizer.jpg , Image:CFpulmozyme.jpg, Image:CFslightclubbing.jpg. Apply to the CF article as desired. --ImmortalGoddezz 07:00, 16 February 2006 (UTC)

I just updated the sweat test article, and will see what I can do. Novangelis 04:33, 11 February 2006 (UTC)

Pathology pictures

I added a link to 62 pathology pictures -- Cystic fibrosis pictures (Univ Geneva, Switzerland). Don't know if they might be available for use on page. HMD 20:02, 16 February 2006 (UTC)

Prevention

Should this section really be called prevention (As to me it implies that you can prevent yourself from getting it like HIV)? It kinda strikes me, personally, as being wrong. Perhaps another term can be found/used? --ImmortalGoddezz 12:42, 21 February 2006 (UTC)

The only word I can think of is prophylaxis. GregorB 22:49, 17 March 2006 (UTC)

Cystic fibrosis and calcium

Wouldn't cystic fibrosis cause deficiencies in calcium as well. Vitamin D is needed to absorb it, and people that have CF tend to have a deficiency in vitamin D. Evan Robidoux 23:45, 27 February 2006 (UTC)

This article looks OK for experts but not for the layman It should have a couple of short paragraphs of introduction in plain words outlining the origins, main symptoms and effects of the disease to make it useful to ordinary readers. Meanwhile it is not worthy of the description "good article" in this general encyclopedia although it might qualify in a specialist encyclopedia . mikeL 4:3:06

Vandalism to watch

A user at the IP 203.208.88.138 [2] has at least twice attempted to add the name Adam Gregory, "songwriter", to the List of notable people with cystic fibrosis section. I don't know of this Adam Gregory but I assume this is vandalism since the user has been vandalising Wikipedia for some time now. Please watch out for this particular edit and revert when you see it, unless you can verify it yourself. --The Famous Movie Director 12:23, 1 May 2006 (UTC)

I have seen that the phrase "only occurs in homosexuals and badgers" is at the end of the first paragraph. I'm new to Wikipedia editing and couldn't find it when I clicked the edit page.

That's because it was reverted when you had your back turned. :-) ... discospinster _talk 00:52, 6 July 2006 (UTC)

Article in Poor Standing

Really I'm disappointed in this article, especially since it underwent a Medicine Collaboration of the Week. There are still a TON of things to work on that quite honestly I just don't have the expertise, nor the time to work on them. I do NOT believe this article deserves a good article tag. Here is a list of some of the things that need to be worked on still, some of it has been mentioned before and as far as I can see, have not been addressed.

Things that need to be addressed in this article.

• sinusitis
• MAC
• ABPA
• fungal infections
• intestinal obstruction
• liver failure
• common side effects due to frequent medications (basically the whole Other complications section needs to be expanded)
• photos (the Vest, Xrays, clubbing, etc)
• the whole treatment section could be clarified, rewritten cleaned up and organized.
• the references really need to be cleaned up and standardized
• possible reference to May as CF month
• too technical

and as previously stated this article is too advanced for the common person. If I had no background in medicine and came randomly stubbling across this page I'd have no clue what any of this meant. The intro at least needs to be less technical, giving a summary of the disease. I think until these things are are looked at this article is in poor standing. --ImmortalGoddezz 20:32, 5 May 2006 (UTC)

It certainly didn't seem to benefit much from our attention! I plan to work on this and atrial fibrillation over the next bit to bring them closer to the goal featured article status InvictaHOG 00:41, 6 May 2006 (UTC)

I started by rewriting the introduction. Let me know what you think - these syndromes that affect every organ system are so hard to summarize in an introduction. I guess I need to learn the new reference system I'm seeing pop up everywhere. For now, I've just used the old ref/note tag. Since ABPA hasn't magically appeared yet, I guess I'll have to start writing it tomorrow! InvictaHOG 05:09, 6 May 2006 (UTC)

Ha, looks like the ABPA article did magically appear! InvictaHOG 18:06, 6 May 2006 (UTC)

I think in the last 24 hours this article has been worked upon more than the whole time (month) that it was a Medicine Collaboration of the Week. I can really only say wow, and thank you. This article really really needs it and it's looking great so far! --ImmortalGoddezz 16:18, 7 May 2006 (UTC)

My goal is to take it to featured status over the next little bit. I'm going to take care of a lot of that today...InvictaHOG 16:30, 7 May 2006 (UTC)

I've rewritten the symptoms section. There's now duplication with the complications section, which I will phase out and replace InvictaHOG 21:59, 7 May 2006 (UTC)

I cut down on the complications section and will soon incorporate the infectious aspects into the pathophysiology part. The complications of treatment will be placed in the treatment section and I will update and reference the epidemiology section InvictaHOG 02:52, 9 May 2006 (UTC)

I'm working through the pathophysiology section. Just have a little more to do on the molecular biology aspect and then can focus on finishing up the treatment and epidemiology sections. I'll put the references in with the new system when I finish with all the edit I plan on doing (it's hard to edit with cite.php!) Still looking for a nice x-ray... InvictaHOG 04:02, 11 May 2006 (UTC)

I've just got the treatment and epidemiology sections to go. The references are now fully standardized and incorporated. I will probably finish up and put this on peer review over the weekend. I will take care of the red links along the way! InvictaHOG 13:47, 12 May 2006 (UTC)

I finished up and am working on the red links now! Time for peer review... InvictaHOG 03:59, 14 May 2006 (UTC)

• Allyson Thadeus-Zappe, Deal or No Deal April 16 and 28, 2006 contestant was deleted by me as a gameshow contestant is hardly a notable person.

Sixty Five Roses

Reading the comments on the featured article candidate made me think of this... Being a part of the cystic fibrosis community for so long makes me wonder why there isn't any reference to 'sixty five roses' in the wiki article. I know that the whole background of the phrase is not appropriate for the article, not to mention sentimental and rather gushy, but from what I've observed sixty five roses is pretty much the slogan for the disease nowadays, not to mention making the rose the 'mascot' of the disease. I can't think of any place in the article that this would look right in, and with InvictaHOG's massive edits I don't want to just go sticking something like this in there without others thoughts/opinions on inclusion. --ImmortalGoddezz 20:21, 8 June 2006 (UTC)

Sorry I missed this edit originally (was out of town over the weekend and thought I'd caught up! I certainly considered adding a paragraph about the Cystic Fibrosis Foundation but couldn't find enough referenced material about it. I saw the history per their website and I have the sense that the foundation represented a watershed in patient research/advocacy, but couldn't find much written about it. I think that a paragraph at the end of the history section detailing their involvement and whatever you think is important would be nice. I just didn't know/couldn't find enough to support it on my own (see the FAC for someone else who agrees with you!) InvictaHOG 02:58, 14 June 2006 (UTC)

That's fine, although I'm not talking about the foundation. If you're unaware the story goes something like this 'boy is diagnosed with cf, mother starts advocating for it. Boy overhears mother talking on the phone, comes into the room. You're working for sixty five roses.' A mondegreen (I say that specifically because I've been wanting to use that word all week). I'm not sure what the association is with any/the foundation but I know that's why the rose is associated with the disease, become it's logo so to say. I'm not sure if the CFF is the one that puts out the sixty five roses calendar, and markets the disease as sixty five roses, I've just heard it mentioned so many times that I've come to associate it as the same. As I do CF, cystic, etc. Which I think is interesting since it actually has a tangible item associated with it instead of just a color like many other disease. I'm not sure it's worthy of adding to the article, but an interesting tidbit all the same. And I just read we're featured. How awesome is that. :) --ImmortalGoddezz 03:12, 14 June 2006 (UTC)

Sixty-five roses is trademarked by the CFF. See here for information [3]. InvictaHOG 03:22, 14 June 2006 (UTC)

Ah, so I see. Hadn't realized that. In that case it'd probably be better of on the CFF article if the sources are ever found. --ImmortalGoddezz 14:41, 15 June 2006 (UTC)

Citation

The statement that because CF cannot be prevented, screening before birth is done primarily for the purpose of abortions, could use a citation. This sounds like a speculative statement, or an untested hypothesis. There are other potential reasons such as parents wanting to be prepared, or wanting to make sure the child receives all available treatment. I don't know what the primary reason is, but it seems a little callous to simply state that if you are having your unborn child screened for CF it is because you are considering an abortion. If someone has a citation for this I obviously would withdraw my objection.

Also, I'll leave the page alone for now, since it is going to be frontpaged tomorrow, and more experienced people than I have already looked at it.Not my leg 22:18, 5 July 2006 (UTC)

Screening tests are ones which early diagnosis changes outcome and/or allows treatment. In this case, abortion is the only "therapy" that pre-natal diagnosis offers - this is especially true in the current age of newborn screening InvictaHOG 04:49, 7 July 2006 (UTC)

Mutation in a gene?

'CF is caused by a mutation in a gene called the cystic fibrosis transmembrane conductance regulator (CFTR)' Correct me if I'm wrong but shouldn't that say 'CF is caused by a mutation in the protein called the CFTR. I always understood that CFTR is a protein, not gene itself... Just finally noticed this because it stopped right in that area on the main page summary. --ImmortalGoddezz 00:26, 6 July 2006 (UTC)

Genes create proteins. Mutations typically involve genes with resultant expression in the protein. The statement is correct. InvictaHOG 04:51, 7 July 2006 (UTC)

one in 25 people?

I have a few quibbles with the use of the adjective "common" in this article. Yes, as far as genetic diseases go, CF may be common, but with only 30,000 patients in the entire US, that makes a fairly rare disease overall - 0.01% of the population. The reality is that most practicing physicians in this country will never encounter a patient with CF. Also, despite a relatively high carrier frequency of 1 in 25 caucasians, 2 carriers trying to have children together would have only a 25% chance of having a child with CF.

The use of "common" appears to hype up this disease beyond the actual frequency, especially when compared to other non-genetic diseases.

If there are that many people with the gene, why isn't the disease more prevelent?

As the artilce says: "At least 97 percent of men with cystic fibrosis are sterile... Twenty percent of women with CF are infertile as a result of thickened cervical mucus, which interferes with the passage of sperm.", so the people who rarely procreate to pass on their genes; of the carriers, I suspect most are aware of their condition and self-select to avoid another carrier. Raul654 01:42, 6 July 2006 (UTC)

Most people do not know they are carriers of the gene. Why should they, most people diagnosed with CF come from a family that has no previous history of CF in the family. Why isn't there more people with CF? The number of CFers in the US is estimated to be around 30,000 that doesn't change. Mostly because the rate of birth and death is fairly 'regulated.' More states are mandating newborn screening of genetic disease so they may be diagnosed earlier than normal but for the most part it's pretty stable. Usually the only way couples find out their carriers is if for some reason they have genetic counseling, somebody in the family has CF, or their child has CF. At least that's from my experience/knowledge. --ImmortalGoddezz 01:54, 6 July 2006 (UTC)

Cystic fibrosis testing is offered to all couples.

Glad to see this is sourced, but surely some kind of limitation must be put on this, like, all couples in the US? 61.9.139.216 05:09, 6 July 2006 (UTC)

:(

This is a sad disease, I had a friend in college with this disease, she was on a 7-year plan or so. When I found out she had/has CF, I learned everything I could. It made me sad to realize that she might not live much longer. whicky1978 ^talk 06:41, 6 July 2006 (UTC)

People with cystic fibrosis don't always die young. Supposed 09:19, 6 July 2006 (UTC)

Also looking for lifespan info, since my son has an adorable friend with CF. Found a sentence with two uses of the same word: Similarly, in much of the western world sufferers of CF live to a similar age. Perhaps someone will fix it. Sufferers of seems to be a common British construct: perhaps strike the first "similarly" and change to "patients with"? My son's friend may be dying young, but she is not a sufferer. Sandy 12:25, 6 July 2006 (UTC)

Fair, point - edit made - sufferers becomes 'people with' and 'patients'.--Ekilfeather 12:51, 6 July 2006 (UTC)

     I actually know somone personally that is one of the oldest CF patients in the world.  57 years old, two lung transplants, but still alive.

72.241.165.155 23:42, 7 May 2007 (UTC)

Caucasian vs European

Why was the correct term caucasian changed to European. Doesn't it affect people in the Americas or elsewhere? Bazza 13:51, 6 July 2006 (UTC)

caucasian is the correct term, it originated in europe from what I understand but it's crossed the seas so 'european' doesn't apply.. i'll correct it. --ImmortalGoddezz 14:06, 6 July 2006 (UTC)

As the Caucasian race article says, "Caucasian" is not used to mean "white" or "of European origin" except in America. I agree "European" is also inadequate. I like "white" but I imagine that has too much baggage and is also ambiguous. There appears to be no standard terminology in Wikipedia (of course there is none outside Wikipedia). The Race in biomedicine article, which would be most relevant to the present context, uses "European" but is not a model article in any sense. It would be nice if there were an article we could link to that wasn't just "here are 30 different interpretations of <white/european/caucasian>: see if you can work out which one the linker had in mind". What labels to use for ethnic groups within Wikipedia is a much bigger issue than this one article. Is there any more general forum on which it is being/could be addressed? jnestorius^(talk) 15:05, 6 July 2006 (UTC)

"White" may be the least bad term to use here. I really dislike "caucasian" as, not only is it not used outside the US, but it is based on a historical misunderstanding. --Guinnog 15:08, 6 July 2006 (UTC)

"White" does not apply here. This disease isn't segregated by race (I know that's not what you're implying) but there are many races that have this disease. Just look at the 'main' photo of the girl. The use of caucasian in this article is not implying that this is only a "white" disease, at least the way I read it. Since there are many interpretations of race depending on the source you go to I believe just leaving at Caucasian is preferable for now. This gene originally mutated from but our best guess is 3,000 BC around the european area. In the anthropoligical sense the bone structure of the skull is the same as any other Caucasoid, so that might perhaps be a better word but even then that means the same as caucasian. But even then it does not specifically belong to the Caucasoid group since the gene has been passed along over the decades to encompass not only caucasions but many other groups. Granted there is a lower prevaliance of this disease among other racial groups (hispanic, asain) but that doesn't mean that it hasn't happened. It is also found in different areas of the world (America, Austrailia, Germany). So it doesn't fit in the Caucasoid group because it has been found in the Negroid, Mongoloid, Australoid, and Capoid races. Perhaps the wikipedia article for caucasion race is best suited for this article "The term Caucasian race, Caucasian or Caucasoid is used to refer to people whose ancestry can be traced back to Europe, North Africa, the Middle East, the Indian subcontinent and parts of Central Asia." But that's just my opinion/thoughts/comments. --ImmortalGoddezz 16:07, 6 July 2006 (UTC)

I don't really agree with this view. I realise this is a really thorny issue we are getting into here, but a simple appreciation that for most of the world "Caucasian" means "coming from the Caucasus" ought to be enough. What about using White (people) if we have to refer to race at all? --Guinnog 16:23, 6 July 2006 (UTC)

I don't think White (people) should be necessary. I don't believe in catering to everybody, then you're just backed into a corner by demands. Personal opinion, but in this case since the article says 'europeans' see that as being from caucasus.. What if this "It is most prevalent among Caucasians.." was changed to "It is most prevalent among those whose heritage comes from one or more of these regions: Europe, North Africa, the Middle East, the Indian subcontinent and parts of Central Asia." If that can be trimmed down.. or something such as. --ImmortalGoddezz 16:34, 6 July 2006 (UTC)

Sure, though that would need trimmed down as you say. It's a more serious point than might appear at first; I wouldn't like to see a good FA marred by using outdated terminology for an unscientific concept. Let's keep thinkig about it. --Guinnog 16:39, 6 July 2006 (UTC)

The current statement "It is most prevalent among Caucasians and Ashkenazi Jews; one in 25 people of European descent carries one gene for CF" suggests "Caucasian" is being equated with "European". I don't think most Americans would include Indians or Arabs within their personal interpretation of "Caucasian". So can I ask the experts: how does the prevalence of CF within (1) North Africa, and Southwest, Central and South Asia, compare with the prevalence (2) within Europe and (3) within East Asia, Southeast Asia, Subsaharan Africa, Oceania and native Americans? If (1) is like (2) then change it one way; if (1) is like (3) then change it the other way. The simplest thing would be to list all the relevant groups: verbose but unambiguous. jnestorius^(talk) 16:50, 6 July 2006 (UTC)

Caucasian seems to be the best term to use. If there's a term that fits then don't shrink away from it just because some unenlightened people aren't comfortable with it for an unknown reason. If they want to find out what it means, then they can click on the term — that's what a web is for after all. --Bazza 19:18, 6 July 2006 (UTC)

Ashkenazi Jews

The explicit reference to Ashkenazi Jews is confusing — why is that group of people explicitly mentioned in the same phrase as the much wider Caucasian? A brief explanaiton might prevent its repeated removal. --Bazza 15:58, 6 July 2006 (UTC)

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=10464623 it does need to be expanded upon in this article. --ImmortalGoddezz 16:11, 6 July 2006 (UTC)

Why shouldn't it be included? We have data for the group and a large percentage have the CF mutation. If there were other groups with similar rates and such robust data, we would include them as well. InvictaHOG 04:54, 7 July 2006 (UTC)

If the explicit reference to Ashkenazi Jews is important, then include it but say why. Just including it in passing adds no information to the article and, as I said, invites people to remove it. --Bazza 07:59, 7 July 2006 (UTC)

External Links

I have tried to start a bit of categorisation of the external links section. You may not agree with the categorisation or even if there should be. Fine. Let's discuss it here. Same goes for whether certain links should or not be included. My view is that even if a link is un-encyc we should err on the side of generosity. Albatross2147 05:30, 30 July 2006 (UTC)

The links were categorized when the article was made FA and there's no reason to combine them if you think that it helps to categorize (I tend to agree with you!). Popular pages such as this really attract a host of links - it's a nice way to contribute but in the end, Wikipedia is not a collection of links and the section can really be subject to bloat. At one point, the section had links to the CF foundation of at least 10 different countries! I reviewed the links tonight and found several that were redundant (and had previously deleted them). The GeneCards and ICD-9 links really don't add much, IMHO and should be excised. The three links to fundraising are fairly redundant - Team Faith goes to CFF, Liv goes to a children's hospital, and Great escape goes to Cystic Fibrosis Australia. There's no need for these pages since we link to two out of the three and donating directly to the foundations bypasses any concerns for overhead in these other organizations. I would support excision of the entire section, especially since there could literally be hundreds of links to worthy fundraising pages. I think that all links should be encyclopedic, since we are building a great encyclopedia here! But I understand what you mean. :) InvictaHOG 05:53, 30 July 2006 (UTC)

If we are going to categorize the links again I would prefer to use this format (again). [4] I think it looks less bulky, as it does now. I believe CF sites that are similar to the CFF (that are in english) for different countries should be included if they're added. Individual sites eg. the faith site (like the one previously added) should not be included, it seems to be for an individual person and lets face it wiki should not identify a particular person with this disease when there are an estimated 40,000 of them. --ImmortalGoddezz 13:30, 30 July 2006 (UTC)

Since there has been no discussion on this in a bit I will redo the links, quite honestly the fundraising links do not belong on here, this is an encyclopedia not a fundraising institute. I can only see fundraising links being appropriate on a page such as Alex's Lemonade Stand which is notable because it has fundraised money, and for an organization, not a particular person. Otherwise, as noted the headings are cluttered I will reduce and recategorize as per the last example. If you have any comments about this I suggest you say so on here instead of reverting whatever edits I make (and preventing an edit war), as this has been under discussion for a few days. Thanks. --ImmortalGoddezz 22:11, 2 August 2006 (UTC)

Looks great! I excised two medical sites which did not add too much IMHO InvictaHOG 22:36, 2 August 2006 (UTC)

gene location image question

Hello, I was browsing through French Wikipédia today, and in the French version of the CF article, I found the image linked here, which is located on Wikipedia Commons. The image shows the chromosomal location of the CFTR gene. Do you believe that it should be included in the main CF article, or perhaps within the Cystic fibrosis transmembrane conductance regulator or CFTR (gene) articles? Thanks. --Tachikoma 15:17, 14 September 2006 (UTC)

It probably wouldn't be remiss in any of them quite honestly... Though that's just my opinion. Since CF is the featured article though I think it wouldn't be out of place to have it on here. --ImmortalGoddezz 00:18, 18 September 2006 (UTC)

(formerly used the sig Tachikoma) Hi, I've added the image to the main CF page, but the sizing and placement could use some help. Unfortunately I lack experience in such matters. --Kyoko 02:52, 18 September 2006 (UTC)

OK, make that "I had added the image," but now someone has taken it out without explanation. I do think that the image is worth showing. I'm just not sure which article is the right one to put it on. I also don't know how to resize a PNG format image. This is important in this case because the chromosome image is longer than the text about CF's molecular biology. I would appreciate additional feedback. Thanks. --Kyoko 14:24, 19 September 2006 (UTC)

I have reinserted the image and added back a few other things that were present before the 'revision' to the article that should not' have been changed without previous discussion. Anyway I believe the image enhances the article, as this page is certainly not an image farm. --ImmortalGoddezz 14:51, 19 September 2006 (UTC)

Regarding Recent Revisions

I feel I must take this opportunity and be bold and say this:
I know recently an edit was made that was not 'in line' with the article as it previously was and did deserve a reversion. But somehow in the chaos that followed it several things happened.

• The linking format, which was previously discussed and agreed upon, was changed back to the way it was. It was agreed upon, if a persons changes their mind especially knowing it had been discussed please bring it up again.
• The Infobox Disease which was added on the day of the article being featured was replaced with DiseaseDisorder infobox.
• An image was taken out that enhances the article.

All together these changes without being discussed is somewhat major. I think this article can move forward and doesn't have to stay exactly the same as the day it was featured but neither does it have to be reverted to the way it was previous to being featured. Thanks. --ImmortalGoddezz 15:08, 19 September 2006 (UTC)

I'm not exactly sure what happened with those revisions. I thought at first there was a simple roll-back, but this was not the case as far as I could see. I attempted to change most things back that I thought must have been inadvertently changed (such as spelling) but didn't see a change to the linking format or the image box. It seems that I should have been more attentive. I absolutely agree that we should try to get the article back as close as possible to the way it was while making sure that the errors corrected by the recent revision remain corrected (which was my intention when I went back through it change by change!) It seems that I may not have been as thorough as I hoped and is probably why I shouldn't edit post-call! Since that applies to my current state, I invite anyone involved to make the desired changes, as long as no one objects! InvictaHOG 00:29, 20 September 2006 (UTC)

Don't remove my edit

CF sufferers deserve to know about the new peer reviewed study showing atomized saline solution as a very promising solution. Do not remove this information from the article without explaining your reasons here. Sdaconsulting 16:17, 13 October 2006 (UTC)

Quite honestly it's not new, but the final studies are just being published within the last year or so, so it has gained popularity and recognition because of that. Hypertonic saline has been around as early as 2004 in the CF community, though not as noticably wide spread. If you'll notice in the article, though, hypertonic saline has already been mentioned with PubMed citation (see reference 34: Kuver R, Lee SP. Hypertonic saline for cystic fibrosis. N Engl J Med. 2006 Apr 27;354(17):1848-51; author reply 1848-51. PMID 16642591). --ImmortalGoddezz 17:15, 13 October 2006 (UTC)

re: "New treatment with inhaled atomized saline solution"

I have actually heard of this, though I am unsure whether this should be placed above older, more conventional forms of treatment. --Kyoko 16:21, 13 October 2006 (UTC)

This section needs to be removed. What they're talking about has already been mentioned in the article Aerosolized medications which help loosen secretions include dornase alfa and hypertonic saline.[34] Hypertonic saline, the 'amazing' atomized saline solution 'discovered' with australian surfers, same thing. Quite honestly I do not see what this section adds besides the fact that an australia 'discovered' this, and it doesn't even call it hypertonic saline, which it is. Besides that it's littered with weasal words like 'extraordinarily successful' without citation and has only one reference (and it's not even a medical journal). --ImmortalGoddezz 17:05, 13 October 2006 (UTC)

I apologize, I thought all references to this very successful treatment had been removed from the article. Now I see the mention of hypertonic saline. I'll go ahead and revert my edit. Sdaconsulting 17:28, 13 October 2006 (UTC)

Sorry, I should have caught the gushing tone and redundancy of the added text, but that's what comes when you go online with bleary eyes. --Kyoko 20:55, 13 October 2006 (UTC)

new table of gene mutation frequency

Hello, I've just added a table that lists the most frequent mutations that cause CF, taken and translated from the French article fr:Mucoviscidose. While I think that the table adds to the article, it doesn't cite a source (not in French Wikipédia either), and it further throws off the alignment of all the images in that section. Any thoughts on this? Thanks.--Kyoko 17:48, 6 November 2006 (UTC)

We talked about that table when we were putting together the article and ultimately decided to leave it out. Not any strong feelings one way or another, but it really should be referenced if it's going to be included! InvictaHOG 18:45, 6 November 2006 (UTC)

This (pdf) accounts for the percentage numbers from delta f508 through to W1282X. I don't see the other ones in there but I just did a quick browse through so I might have missed them. --ImmortalGoddezz 19:33, 6 November 2006 (UTC)

OK, then perhaps the table should be edited to list only those mutations that are listed in the PDF? I'm still new to citing references, so I don't really know what to do here. Sorry! There are two other things that jumped out at me when skimming through the French article, but I'll stick them under another talk page heading. --Kyoko 22:30, 6 November 2006 (UTC)

I just deleted the rest of the mutations that weren't in the article and added it as a reference. It can probably be placed better so feel free to fiddle. --ImmortalGoddezz 02:29, 16 November 2006 (UTC)

2 more things from French article

There are two more things that were obvious differences between the French and English articles (besides the language, silly me!):

1.The French version talks about CF's discovery by one Guido Fanconi, someone who is not mentioned at all in the English version. While I had vaguely heard of an anemia with this guy's name, I hadn't heard of his name in relation to CF. The translation of this section is as follows:

It was in 1936 that professor Guido Fanconi first described (this disease). He characterised the illness and gave it the name of mucoviscidosis. The term consists of two words: mucus, viscous, and the suffix -osis. The suffix "-osis" refers to a disease. The terms "cystic fibrosis" or CF are used in English-speaking countries.

2. The French version has a table describing how the sperm of male CF patients differs from that of the general population, in terms of its chemical composition and pH level. Unlike the Fanconi content, this table has a citation: Holsclaw DS, Perlmutter AD, Jockin H, Shwachman H (1971) Genital abnormalities in male patients with cystic fibrosis. J Urol 106:568-74

I hope mentioning these changes here first was more helpful than simply inserting them as I did with the gene mutation table. --Kyoko 22:49, 6 November 2006 (UTC)

I added Fanconi - there were several people around that time who described patients which presumably had CF. Anderson seems to have done it best and most definitively and thus is typically cited in the English literature. I have not read Fanconi's original article, but from the title he obviously describes a relationship between celiac, cystic fibrosis of the pancreas, and bronchiectasis. There's probably some degree of English language bias so I've tried to correct that. As for the semen composition, seems like it doesn't really add much and is probably best left out, IMHO. InvictaHOG 23:48, 6 November 2006 (UTC)

I'm not really motivated to look for Fanconi's original article. I was leaning towards leaving out the details of sperm composition myself, because in the larger scope of things, details like that are minor importance to the general public. --Kyoko 00:06, 7 November 2006 (UTC)

Excess whitespace under "treatment" header

I'm new to wikipedia and it seems that theres an image that cuts into a section leaving quite a bit of white space. The URL of the image is http://upload.wikimedia.org/wikipedia/commons/d/d9/Mucoviscidose.PNG and it cuts right into the "Treatment" header. Not a really important change needed but it would help readability. --VoiDeD 01:58, 16 November 2006 (UTC)

I don't see a lot of white space, I know it shifts the treatment header and accompanying text to the left, but it doesn't leave a ton of whitespace. (Maybe it's different on your browser?) Not much that can really be done about that besides moving the image and since the image is right by molecular biology section it really can't be moved much since it would look out of place elsewhere in the article as far as I can see. That's just me though... somebody might have a different idea of what to do about it. --ImmortalGoddezz 02:10, 16 November 2006 (UTC)

Yes, I noticed that there is no extra whitespace when viewing in Firefox, but, heaven forbid, if anyone is using Internet Explorer, the whitespace is very visible. I suppose there isn't anything you can really do in this case, it must just be a browser issue. --VoiDeD 02:43, 16 November 2006 (UTC)

This puts me in the peculiar position of considering the deletion of an image that I had added to the article. I'm wondering if perhaps the image should be deleted altogether, and the text modified to say, "The [[CFTR (gene)|CFTR gene]] is found at the q31.2 [[locus (genetics)|locus]] of [[Chromosome 7 (human)|chromosome 7]], is 180,000 [[base pairs]] long..." This makes the text look like the following:

Molecular biology

The CFTR gene is found at the q31.2 locus of chromosome 7, is 180,000 base pairs long...

How about that suggestion? --Kyoko 03:06, 16 November 2006 (UTC)

I just moved the picture of the vest treatment to the left and the white space is removed. It looks a little odd (to me anyway) but the white space is removed while viewing in IE.. soooo possible solution? --ImmortalGoddezz 03:49, 16 November 2006 (UTC)

I've just looked at it in Firefox again (sorry, no IE because I use a Mac) and the chromosome image still ends up being mostly within the "Treatment" section. I think part of my problem is that I have a widescreen monitor, which great for watching DVDs, but not quite as handy for reading long sections of text. I think I'll add the locus (genetics) link right now, though. --Kyoko 04:13, 16 November 2006 (UTC)

I think that's partially because it's such a long image and since the section is already smaller it'll going into the treatment section anyway. I noticed in IE though it wasn't just in the treatment section it was bumping the treatment section header down below the (very) long image so it looked like somebody had put a bunch of space between the end of the molecular section and beginning of the treatment section. Anyway hopefully the image won't have to be deleted.. --ImmortalGoddezz 05:05, 16 November 2006 (UTC)

my rationale for changing the CFTR link

Hello, I changed the introduction a little so that when it talks about the CFTR gene, the link goes to the CFTR (gene) article and not the article about the protein encoded by the gene, the cystic fibrosis transmembrane conductance regulator. I also changed the following sentence so that it links to the CFTR protein article. I think that this is more accurate than the previous version, but if you feel that I was excessively bold, feel free to revert. Thanks, --Kyoko 15:08, 17 November 2006 (UTC)

i don't agree with the information regarding Cystic fibrosis

i agree

the information in this article are well written and intriging i enjoyed the info and i thank and appreciate it, this should be published in md magazine 72.88.236.113 20:55, 6 December 2006 (UTC)

Archive?

I wanted to wait until there wasn't a lot of current activity on the talk page. Anyway the talk page is getting pretty long, I think archiving it would be a good idea. I personally don't want to do it (don't want to screw something up) but I thought I'd mention it in case somebody else wants to. --ImmortalGoddezz 22:21, 13 February 2007 (UTC)

English usage error: disagreement of subject and verb

16:26, 14 February 2007 (UTC)16:26, 14 February 2007 (UTC)16:26, 14 February 2007 (UTC)~At the beginning of the second paragraph of the article on cystic fibrosis, the first sentence begins with: "1 in 2500 (are) born with CF." Since "1" is singular, it should read: "1 in 2500 (is) born with CF." Joehopkins 16:26, 14 February 2007 (UTC) Joe Hopkins

the vas deferens

The vas deferens is generally present, NOT missing in men with CF. Infertility typically is caused by mucus blocking the vas deferens and inhibiting development, not the lack thereof.

Wikipedia states: " These men make normal sperm but are missing the tube (vas deferens) which connects the testes to the ejaculatory ducts of the penis".

Please correct, there are many sexually active young CFers out there who may read that.

"Men with cystic fibrosis are often unable to father a child (infertile) because the tubes that carry sperm (the vas deferens) are blocked by mucus and do not develop properly." http://ghr.nlm.nih.gov/condition%3Dcysticfibrosis

Thanks! Sarah Anne 69.243.74.36 04:28, 18 February 2007 (UTC)

Given the fact that the references (a link can be found at the bottom containing them) on that site do not deal specifically with the infertility of males with Cystic fibrosis and the reference on wikipedia clearly does (Male fertility in Cystic Fibrosis) it should be left as is. Not only does that references deal specifically with male infertility but the one directly above it does as well and they both state "Men with cystic fibrosis (CF) have bilateral absence of the vas deferens."

Even one of the references they provide states "More than 95% of males with CF are infertile as a result of azoospermia caused by absent, atrophic, or fibrotic Wolffian duct structures. CBAVD occurs in men without pulmonary or gastrointestinal manifestations of CF. Affected men have azoospermia and are thus infertile."

The link you provided while provides a nice overview of the disease is not necessarily (in my opinion) trustworthy. --ImmortalGoddezz 05:00, 18 February 2007 (UTC)

History (last paragraph)

As a CF patient myself, I would prefer if the last line said "CF patients" instead of "CF victims" That's a bit too harsh for me. We like to use more positive terms. Lmattaway 17:45, 26 February 2007 (UTC)—The preceding unsigned comment was added by Lmattaway (talk • contribs) 17:43, 26 February 2007 (UTC).

1 of 2500 children?

I'm not sure if my sources are legit, but I just googled that and I found that majority of the sites I visited said 1 of 3400-3800 Caucasian children or something around 3000-3600 children overall. Does anyone have a legit citation for this? 24.22.101.92 05:45, 28 February 2007 (UTC)c