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Thread: To remember or not?

  1. #21
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    Hmm, I don't seem to be able to find the 'candle map'. Could someone direct me please?
    Behind every great man is a woman rolling her eyes.
    Jim Carrey



  2. #22
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    Quote Originally Posted by Hammy8241 View Post
    Hmm, I don't seem to be able to find the 'candle map'. Could someone direct me please?
    There used to be a link to it at the top of each page, I think, but now I think you'll at least find it at the bottom of any of vdub's posts. I hope so. And welcome back!
    Anne, dx'ed April 2011

  3. #23
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    Yeap, the link is in my signature block below....
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

  4. #24
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    Thanks - I had found this one
    Map link on where our readers are located.

    and can see your link at the botttom of the page......but neither link titles would make me look for the candles...nor in any write-up is it explained just what the candles indicate. Is it because the site does not want to worry newbies or acknowledge that we don't always win?

    The members map was, and is a great idea, as is adding the candles for those whom we have lost. But I would ask that consideration be given to the wording and/or a second memeorial map is done. This is because, whilst you might remember names, you don't always remember where they lived in the world.

    Also, thankfully we have many, many more sufferers alive than dead. IMO, the candles are lost in the living pins and hard to see/find.

    Many thanks in advance.
    Behind every great man is a woman rolling her eyes.
    Jim Carrey



  5. #25
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    The concept of the map and the meaning of the candle is explained in the first sticky under "New Member Intro". That's probably as good as can be done, but if you want to work on the wording more, please forward it to me and we can replace the existing.
    New Member Introductions And Stories

    Also, thankfully we have many, many more sufferers alive than dead. IMO, the candles are lost in the living pins and hard to see/find.
    I'm thinking that might be a good thing. We certainly wouldn't want to greet a new member with a bunch of candles suggesting they are likely to die. I kind of like it that they have to hunt a bit for a candle.

    On edit: I was just looking at the map and noticed right away that someone had made a mistake and used a sunflower. I saw the sunflower with no problem, but when I went looking for a candle, they are harder to see. Specifically, I was looking for Barbara's in Spain -- it was very hard to see. Maybe we should change all the candles to sunflower.
    Last edited by vdub; 07-15-2016 at 09:56 AM.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

  6. #26
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    Quote Originally Posted by vdub View Post
    Maybe we should change all the candles to sunflower.
    Good idea!
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  7. #27
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    There are a lot of different colors too. Is there any significance to colors of people 's pin?
    Knowledge is power! Wisdom is using it to make good decisions!

  8. #28
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    Good question. It seems the different colors of pins helps to see the different pins next to each other in clusters. With the flowers, it seems there would be less of a problem with them getting covered up by clusters of pins, in densely populated areas on the map.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Last edited by annekat; 07-15-2016 at 07:26 PM.
    Anne, dx'ed April 2011

  9. #29
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    Last post on this by me as either I am being thick, not explaning myself well or the site is happy with the status quo.


    Coming back to the site after some time of inactivity, I wanted to go to the map - look at the candles and spend some time remembering those who did not make it. People who gave me help and advice when I needed it.

    I searched but could not find the map (Which I thought was seperate from the members one). I could not find any mention of the dead/memorial/candles etc which would guide me.

    Since my 'active' time, many more sufferers have sort information and help from the site - the number of pins has greatly increased . This makes trying to see the candles very hard to find, unless you know where and what part of the world they came from.

    All I would like to see is a mention in a title about 'memorial' (or other suitable word) for people to be able to find the departed easily (or their own map).

    Both the two posts below fail to mention this in the titles - how are people going to find them? Death is the only certanty there is in life. It is not something to be ashamed of or hidden. The best we can do is to remember them. (Do we need both posts - could they not be merged?)

    People with WG do die - thankfully with the modern treatments very many less than i the past. This is not meant to scare members but to be honest, show respect to them and acknowledge that it can happen.






    15-07-2016 17-53-17.jpg

    15-07-2016 17-54-16.jpg
    Behind every great man is a woman rolling her eyes.
    Jim Carrey



  10. #30
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    the site is happy with the status quo
    That does appear to be the case. Last night I glanced at the number of views and it was at ~1,600. Now its at ~1,750. That means 150 people have viewed this message in the last 12 hours with no comment and don't seem to be interested one way or the other. If I get around to it, I might experiment with changing the candle to the sunflower to see if it increases visibility, otherwise, I'll leave the site alone.
    Last edited by vdub; 07-16-2016 at 03:51 AM.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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