Talk:Fabry disease/Archive 1

Archive 1

treatment

There is also another treatment (licensed in Europe and other countries) called Agalsidase-A (Replagal).

I was involved in running the alpha-gal A trials in the UK. If I can help with this page (without breaching my confidentiality agreement with TKT) let me know. --Amdsweb 12:50, 3 March 2006 (UTC)

review

Narrative review in Ann Intern Med this week: PMID 17371887. JFW | T@lk 16:34, 21 March 2007 (UTC)

Apostrophe

There appears to be no apostrophe 's in this disease's name.

It shoudl be placed back at Fabry disease. Even google knows how to spell it [1].

(Interstingly Google actually has just under 10,000 more hits for "Fabry's disease" than "Fabry disease". Is that all wikipedia's fault?)

Anyone objecting to moving.--ZayZayEM (talk) 03:14, 30 October 2008 (UTC)

Other references checked also indicate that the proper name is "Fabry disease" so it should be moved. —Preceding unsigned comment added by 216.134.203.4 (talk) 21:14, 16 April 2009 (UTC)

comprehensi'bility

I have just read the opening paragraph and I have no more idea what this disease is than I had before I looked it up.

Anyone who understands that paragraph doesn't need to read a Wikipedia article about it.

Cannonmc (talk) 13:08, 14 June 2015 (UTC)

Cannonmc - Exactly so. This has long been a concern of mine in Wikipedia's medical, technological, and scientific articles especially.

I advocate that 1) avoid jargon in the early part of articles (at least the lede), writing instead in plain language, so that the average reader can understand what they are reading! Then for people who want more scientific detail, the latter portion of the articles can go into the appropriate jargon.

Or 2) if you do use jargon throughout, active links lead readers to another article that covers a term, which in turn contains a linked bit of jargon that takes a reader on to another page to find out what that term means, on and on. Then the reader gives up in frustration and leaves the site. Or they forget what they were there to discover in the first place and leave the site, no more enlightened than before coming to Wikipedia. Instead of just linking a bit of jargon and blithely typing on, go ahead with your link but include a brief parathetical description. This will keep readers oriented to the topic without having to surf all over the site if they don't want to do so. The mouse-over pop-ups help a lot, unless that article's lede in also written in a jargon salad.

EXAMPLE:

• Existing first sentence of the lede - "Fabry disease is a rare genetic lysosomal storage disease, inherited in an X-linked manner." Average reader says herself, "WHA...?"

• Plain language (off the top of my head) - Fabry disease is a rare inherited disease of the lysosomes, small packets of enzymes within the cells of the body, and inherited through the mother. (This is my personally desired format.)

• Brief parenthetical explanations - Fabry disease is a rare genetic lysosomal storage disease (a group of inherited diseases that effect small packets of enzymes within the body's cells), inherited in an X-linked manner (through the mother). This technique makes the sentences more awkward, especially if read aloud.

This reformatting will go a LONG WAY towards increasing the educational value of Wikipedia (the provider of knowledge). This will create, I truly believe, more satisfied customers (the readers) and increase the revenue (donations). Frustrated, confused readers are not likely to donate to the project, after all.

Thank you for your time and consideration, Wordreader (talk) 15:19, 21 September 2017 (UTC)

I agree that the opening sentences difficult. I rearranged the structure, without changing content. I think this will help. I think that the concepts of 'lysosomal storage disease' ,'X linked' and 'sphingolipidosis' are best left to their related pages,rather than expanding here. 09:42, 1 January 2018 (UTC) — Preceding unsigned comment added by Jhunt29 (talk • contribs)

External links modified

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