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Thread: Design Stage Feedback

  1. #11
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    The other idea is to have some fun with the app. For example to have an album like yours, before and after pred, and some other memes.

    Here are some of mine

    FB_IMG_1491840684810.jpg

    FB_IMG_1491840690643.jpg


    Or

    FB_IMG_1491840696648.jpg

    Another:

    FB_IMG_1491840723301.jpg

    I have some more
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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  3. #12
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    Hey, my two cents, which may be worth less than that. Our daughter uses at least one app regarding her WG. I don't use any app for anything lol. My point is that younger generations are probably more likely to use any sort of app. We know dozens of kids 21 and under who deal with WG and who can make an incredible contribution to the body of knowledge about this disease. If there's a way to get wording to be inclusive of all ages, that would be awesome. For example, kids usually don't have work, but missing school is a big deal. And if they move away to college, they often have a need to coordinate care between a doctor local to their school and their doctor back home. Tracking mentrual cycles is another layer to this that differs from pediatric to adults. Seems like a lot of pediatric-onset WG occurs towards the beginning of puberty, which means cycles haven't started or are still irregular. When kids are first diagnosed they are often in extreme crisis and are administered Cytoxan, which disrupts cycles more. Sterility or even "normalcy" is such a big deal to adolescents, and a way to track that might be of interest.

  4. #13
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    Quote Originally Posted by whatthewhat View Post
    Hey, my two cents, which may be worth less than that. Our daughter uses at least one app regarding her WG. I don't use any app for anything lol. My point is that younger generations are probably more likely to use any sort of app. We know dozens of kids 21 and under who deal with WG and who can make an incredible contribution to the body of knowledge about this disease. If there's a way to get wording to be inclusive of all ages, that would be awesome. For example, kids usually don't have work, but missing school is a big deal. And if they move away to college, they often have a need to coordinate care between a doctor local to their school and their doctor back home. Tracking mentrual cycles is another layer to this that differs from pediatric to adults. Seems like a lot of pediatric-onset WG occurs towards the beginning of puberty, which means cycles haven't started or are still irregular. When kids are first diagnosed they are often in extreme crisis and are administered Cytoxan, which disrupts cycles more. Sterility or even "normalcy" is such a big deal to adolescents, and a way to track that might be of interest.
    This is what I'm talking about. This is great feedback and ideas I haven't thought about since I'm operating from my experience. Love this idea, and absolutely agree. I'm going to start a terms of reference for what I want to see, and these suggestions will definitely be on there. Thanks a million!!!

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    There is an App called Lupie Diary, that someone shared today, in a Lupus group that I am in.

    It has personal information, an alarm reminder for medication etc, a self management field and also a medical records area and other fields

    I haven't purchased it, because I really just don't get things like that, but from what they are saying, it is good.

    Maybe worth checking out and see where improvements can be made
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  6. #15
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    Quote Originally Posted by mishb View Post
    There is an App called Lupie Diary, that someone shared today, in a Lupus group that I am in.

    It has personal information, an alarm reminder for medication etc, a self management field and also a medical records area and other fields

    I haven't purchased it, because I really just don't get things like that, but from what they are saying, it is good.

    Maybe worth checking out and see where improvements can be made
    Thank you Michelle.

    This is the kind of thing I'm talking about. My doctor has wanted to do one for Vasculitis for a couple of years now. We were going to work on it together, along with one of her grad students, but it never happened. This is why I think we can do something great and bigger picture. No purchase necessary for the app, and have it for everyone with an autoimmune disease, and start showing the world the scope of this disease, and use the data to even further that objective and push towards obliteration of autoimmune disease.

    See how I operate in delusions of grandeur? Ha ha. Shooting high.

  7. #16
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    Quote Originally Posted by Alysia View Post
    mmmm So I think I understand what you are looking for, marta, of course, to find the common thread

    So maybe this app can be the tool.

    There is an app Wase here for drivers, which collect info from all drivers and give you an estimate of traffic etc.
    So our app should be connected between the users and a statistical data center. The data center (if the user gives permission) will be able to collect all data from the user and to make statistical analysis.

    So there is a need for 2 more sections: I will call them: hypothesis and diary.

    Hypothesis: In it each user will write his own hypothesis for his disease and for flares up.

    Diary: special events which might be a triger. in the diary, the user can write, for example that he got vaccins, had the flu, breathed near mold, had stressful event etc. The app will sent it to the data center and will check later if this is in correlation with the user disease's activity and with other users. The diary can be used for issues that maybe we dont think about. So the users will be invited to share special events.

    And your picture gives me another idea. I will write another post.
    Absolutely. I like that idea because we are most engaged and curious as to the possible trigger, so that might be a good idea. In a perfect world, where everything turns out the way it's meant to, I would love to find a rich dot-com-er with lots of money to blow, and an understanding of AI (not autoimmune but artificial intelligence) where they would be interested in finding the answer. Once we start harvesting data, it would be great to put an AI scouring program to look for patterns and come up with hypothesis. I saw this guy on Ted Talks yesterday and will send him my crazy idea. What's the worst that can happen? He laughs at me and doesn't do anything. I'm totally OK with that, my ego won't be hurt, but I'll know I tried. And now that I've typed it out here, I have to try, ha ha. Here's the talk that I saw yesterday that I will use as a spring board. (On a side note, in the last few days, I keep stumbling over things that totally jive with this idea, so the universe might be giving me some helping hints.) https://www.youtube.com/watch?v=aR5N2Jl8k14&t=304s Augmentation baby.

  8. #17
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    You mentioned a possible app for meds among other things. As for meds, have you seen this app?
    https://medisafe.com/

    I have started to use it. Its free and no ads or catches of any kind. It is probably most useful when you have a lot of meds to keep track of.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
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  10. #18
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    Quote Originally Posted by vdub View Post
    It is probably most useful when you have a lot of meds to keep track of.
    We don't know anyone like that, do we? Ha ha.

    Thanks for the info vdub. I'll check it out. I seem to be ok at remembering when pred is involved (for obvious reasons,) but once I'm off it, I tend to have the odd day where I miss taking my meds. Too busy living I guess.

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    Wow here we have in a nutshell what got me hooked on this Forum 9 years ago; something exciting, positive and uplifting, in short the perfect medicine!!
    Once we know we are relatively "safe" in our lifeboat, free from imminent capsize etc we have to plot a course to the shore and lasting freedom; this would appear to me to me a wonderful opportunity to grasp in our hands. I was excited before I logged on tonight as the local TV was covering the incredible build up of a drug companies coming to the city of Cambridge, where the Centre of Excellence Addenbrookes hospital is located. I am sure that it is only a matter of time before, as Marta has stated, that a breakthrough is made with regards to the large umbrella of AI diseases are concerned.
    A simple to operate App but with the facility to enable a quick and reliable accumulation of information must be a tremendous boon to our cause. We are our own advocates and probably know as much as a large percentage of the medical fraternity so the information would be "solid gold"
    I, along with many others, no doubt have been involved in all sorts of trials and data gathering exercises and this App would appear to take that to another level!

    At first glance Marta, you and Alysia would appear to have covered most of the required fields but I know that this Forum will chip in with great ideas.
    I look forward to reading more about the develoment with excitement!

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  13. #20
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    Quote Originally Posted by Geoff View Post
    Wow here we have in a nutshell what got me hooked on this Forum 9 years ago; something exciting, positive and uplifting, in short the perfect medicine!!
    Once we know we are relatively "safe" in our lifeboat, free from imminent capsize etc we have to plot a course to the shore and lasting freedom; this would appear to me to me a wonderful opportunity to grasp in our hands. I was excited before I logged on tonight as the local TV was covering the incredible build up of a drug companies coming to the city of Cambridge, where the Centre of Excellence Addenbrookes hospital is located. I am sure that it is only a matter of time before, as Marta has stated, that a breakthrough is made with regards to the large umbrella of AI diseases are concerned.
    A simple to operate App but with the facility to enable a quick and reliable accumulation of information must be a tremendous boon to our cause. We are our own advocates and probably know as much as a large percentage of the medical fraternity so the information would be "solid gold"
    I, along with many others, no doubt have been involved in all sorts of trials and data gathering exercises and this App would appear to take that to another level!

    At first glance Marta, you and Alysia would appear to have covered most of the required fields but I know that this Forum will chip in with great ideas.
    I look forward to reading more about the develoment with excitement!
    Wow, here we have in a nutshell why I love Geoff as much as I do.
    Exciting, positive and uplifting and forever supportive.
    This is why this forum is so great.
    You can come on here with aches, pains, complaints, questions, and yes, crazy ideas, and you know you'll be supported and not judged with anything you put down on screen.
    The safest place to be a weggie.
    Last edited by marta; 04-28-2017 at 04:05 AM.

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