Talk:Biliary atresia

Aunt
Aunt Amanda: potential future edits -

1) I've been researching biliary atresia for the past 4 years (my almost 8-yr old niece has the disease) and before this wikipedia page I had never heard the word "kernicterus." It's just not a central concept for parents/families who are dealing with BA for the first time (people who I assume would be key users of this article).  Yet the word kernicterus appears twice in a very short article, at the beginning no less.  No offense to anyone, but I'd rather edit it out.  If there are strong reasons to leave it in, pls let me know.

2) I added a link to my blog "Imagine Bright Futures" because it has links to the websites of many children with biliary atresia, which might comfort a parent who is new to dealing with the disease, as well as blog entries to often asked questions, such as "Can biliary atresia happen more than once in a family?" My blog also has a news feed on BA from yahoo and google, and a recent medical articles feed from pubmed.  I receive no income from my blog, so this isn't a business promotion, more of a public service.  However, if anyone wants to take this link off, of course, feel free, as I don't know what the policies on blog links are.

3) I'd like to add "liver and biliary tract" as a medical category, because that seems more relevant than congenital defects.
 * How do I do this?
 * re: congenital defects - There are a few different types of BA, including one that can be diagnosed before birth, and thus is clearly a birth defect, and one that shows up after birth, which is not so clearly a birth defect. That at least is my impression, and of course I'll reference the relevant research once I get to writing about it, but I'm not 100% convinced that BA is always a birth defect.  Therefore I'm not certain that the category should be applied.  Opinions?

BA treatment center pages and other questions
from Aunt Amanda: As a newby with a fair amount of subject knowledge and limited time to wade through proper Wikipedia protocol, I have a lot of questions and would appreciate advice.

1) I noticed that the Cincinnati Hospital and Medical Center webmaster (CHMC webmaster) added links to the Cincinnati Hospital site; I wonder if a category of treatment centers would be more appropriate (as opposed to external links)? There are many, many other centers as well, in many countries in the world.  If we're going to include one, why not all?  How do other medical subject pages, especially rare disease subject pages, handle this?

2) Though I have not found a list of kasai surgeons and their success rates, UNOS does provide a list of pediatric liver transplant centers with survival rates. Perhaps a link to the UNOS site and stats would be helpful as well?  Or is that more appropriate for a pediatric liver transplant page?

3) And should facts about the kasai surgery be on their own kasai page? I'm leaning that way.  There are new innovations, there are different types of kasai surgery, controversies over whether the kasai works after a certain age, reports of the oldest-living kasai survivor, etc. etc.

Also of interest is the fact that the U.K. centralised their biliary atresia treatment (kasai and pediatric liver transplant) operations from many centers down to three in the past decade, thereby improving survival rates pre-tx. (I will of course reference articles when I get to writing about that.) I know that because of the speed with which the kasai operation happens (1 day to 1 week after diagnosis, which can take place anywhere in the first 3-4 months of the child's life, a time-period when parents tend to be quite overwhelmed anyways) that parents often don't have time to research surgeons or hospitals at all. I know that some experienced parents out of the U.K. recommend that kasais be done only by surgeons who do 5 or more per year.

4) I'd like to add a category of rare diseases, assuming that there is one, but an unfamiliar with how to add categories. Help is appreciated.

5) Also need advice for the general article outline. For example, the medical literature for biliary atresia discusses multiple potential causes of BA (pathogenesis); types and variations (with choledochal cyst, polysplenia, situs inversus (reversed organ layout)); epidemiology (varies depending on data source, population studied, etc.); outcome data (survival stats, etc.); medical treatments (both mainstream and alternative).  I'm sure there's more.  Is there a standard format for rare disease articles in Wikipedia?

Hmmm.....The basic questions that a family has when faced with biliary atresia (or likely any childhood disease diagnosis) are:

1) What is it? subquestion: And how is it accurately diagnosed?  What's the gold standard for diagnosis?  subquestion: Also - what diagnoses need to be excluded?  (I add this because kasais have been mistakenly done on children who have alagille's syndrome, much to the parents dismay because a kasai does nothing for those children. Also, PFIC has been missed, etc.)

2) Ok, well what do we do about it? What are the immediate treatments?  Longterm?

3) What's the prognosis? Shorterm; longterm - Will my child live? What quality of life will they have?  Will they be able to have children, etc. etc.

4) How did this happen? Did we do something wrong or somehow cause this?! (No.)

5) Who else does this happen to?

Undefined words -- jargon
Obviously written by someone with more than passing knowledge of the subject, there are too many words that might be second nature to a professional but are meaningless to most readers. The following terms, as an example, all should be defined or avoided:

atresia, allograft, cholestasis, pruritus, hyperlipidemia, cirrhosis, portal hypertension, conjugate, bilirubin, photo therapy, etiopathogenesis, CMV, peribiliary fibroblasts, epithelial, cholestasis, cytokines, profibrogenic, varix bleeding, etc., etc.

A medical degree shouldn't be a prerequisite to reading a wikipedia article! Too Old (talk) 13:14, 5 April 2013 (UTC)

General copyediting
Hello to all interested. I am starting to do some copyediting to make this article more comprehensible. Please note that I am by no means an expert on this subject matter, although I am well-practiced in reading scientific literature. If you see me introduce any factual errors, please let me know. I have this page watchlisted so you can just bring it up here. Thanks. -Starke Hathaway (talk) 15:17, 5 August 2015 (UTC)