Talk:Facioscapulohumeral muscular dystrophy

pronunciation guide - accessibility

It seems like the pronunciation of this is good but it's just for the first part, and not 'muscular dystrophy.' Is this a good way to do it or is this the proper way to add in pronunciations? I think it should at least include the rest of the name, even if the rest isn't sounded out in IPA. Right now it reads as if the way you pronounce "Facioscapulohumeral muscular dystrophy" is just "fay-she-oh-sca-pu-lo-hu-mer-ul" with no "muh-scu-ler-dis-tro-fy". To be clear, I understand and see what is happening, but shouldn't it somehow be indicated in the pronunciation that it's just a reference to the first word? Personally however, I am in favor of just spelling out the entirety of all the words in IPA, which would capture any inter-word phonological changes (there aren't any in this instance, in my dialect, afaik). 2603:3016:2286:8100:DDDA:A42D:3608:8FD5 (talk) 21:25, 23 October 2023 (UTC)

I'm not an expert on the standards of Wikipedia. When I put in the pronunciation guide, I was focused on the facioscapulohumeral part because I myself couldn't find consensus on how this was pronounced when talking to those familiar with the disease, and so I see the dictionary-backed pronunciations as valuable. The pronunciation guide in this article is already very long, due to the length of facioscapulohumeral and its variant pronunciations, so I didn't want to make it unneccesarily longer by adding in the pronunciation for muscular dystrophy, which is more intuitive and more easily looked up.

Additionally, from memory I don't believe any of the other muscular dystrophy wikipedia articles have pronunciation guides for the "muscular dystrophy." I believe a similar situation I modeled this article after was the pronunciation of Coeliac disease, a featured article which does not provide the pronunciation for "disease." Lukelahood (talk) 01:56, 27 October 2023 (UTC)

Ah, sounds good then, and if there's a precedent for pronunciations this way then I have no objections. I understand the reasoning for your writing this way, it's just the imprecision of "pronunciation" being equated to only a portion of the title/name makes me itch. I assume this is something that happens with many/all articles though and I will have to get over it! Thanks for responding! :) 2603:3016:2286:8100:C10D:DA13:7671:7764 (talk) 20:57, 7 November 2023 (UTC)

Thank you for your interest. It made, and still makes, me itch too. Lukelahood (talk) 21:56, 6 January 2024 (UTC)

Voice of the Patient Report

@Theflyer,

Thanks for your edits on this article. I have some concerns about the addition of the section "Voice of the Patient Report" in the "Signs and symptoms" section. The majority of the added text describes the source, with the only immediately usable content being "While FSHD is often perceived to be "mild," the report shows that over 80% of patients report being "moderately" or "severely" limited in daily activities." I think that everything prior to that sentence is not useful to the majority of Wikipedia readers, and rather is only important to the integrity of the source. I propose taking your edits and turning it into a single sentence, something similar to "Moderate to severe symptom burden in an FSHD patient is usually perceived as mild by those without the disease" and then putting in the citation itself the rest of the text "The FDA held an externally-led Patient-Focused Drug Development meeting with about 400 FSHD patients on June 29, 2020, resulting in a seminal document called the "Voice of the Patient Report." The report captures the impact of FSHD on the daily lives of those with the disease as conveyed by the patients themselves."

You can see an example, a similar but not the exact same concept, of this by hovering your cursor of citation 51, where I put information that I deemed less useful to readers about the origin of the name "D4Z4"; although it is definitely interesting to those with enough interest in the source/origin to hover their cursor over it. Another example is citation 1, where I go into a nitty gritty about the pronunciation of FSHD. Lukelahood (talk) 02:15, 10 February 2024 (UTC)

That sounds reasonable. Feel free to make that edit. Thank you for asking here first, and I apologize for the delay in seeing your question here. Theflyer (talk) 15:39, 21 February 2024 (UTC)

Thanks for seeing it from my perspective. No worries about the delay. I've made my edits. Maybe you have further edits to make.Lukelahood (talk) 18:59, 25 February 2024 (UTC)