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Thread: Design Stage Feedback

  1. #1
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    Default Design Stage Feedback

    Hi everyone,

    It's Marta...the one with the perpetual flow of crazy ideas.
    I'm working on a new one, and would love some feedback.

    As a background, I should tell the newer people on here that a few years back I put together a small ten question survey that with the help of Andrew's promotion on here, got just over 1,000 Weggie respondents, and subsequently was used to publish an article in a French Rheumatology Journal supporting the fact that patient driven data is just as reliable as official research driven data. So thanks to this site, Andrew, and it's users, we are that much further in validating our knowledge and experience as research worthy.

    Now... my new crazy idea.

    I would like to build an app for people with autoimmune disease. In my experience, the issues we are having are pretty much duplicated in the over 140 other autoimmune disease groups and by bringing attention to the disease as a whole, we will have not only more visibility, but also a greater chance of finding a cure. If a cure is found for MS, or Lupus, or RA, then a cure is found for us and vice versa. That is if it is a true cure, addressing the etiology of autoimmune disease where the immune system turns on healthy tissues. That being said, I think that if we build an app that can help the patient with their everyday life with Wegener's, we can also help a number of other patients dealing with other autoimmune diseases. While helping patients in the foreground, we could gather data in the background that could help us in our goal to educate researchers, to motivate legislators and funding with metrics, and to bring this disease to the forefront of cultural awareness. We are with autoimmune today, where cancer was in the 70's. The general public (and even some medical practitioners) are quite clueless as to the scope, the cost (both financial and human,) and the potential positive gain society can accrue from eliminating this disease. By gaining these metrics (excluding personal information) we can move our cause forward a hundred fold.

    So here's my question for you. What kinds of elements would you like to see in an app that helps you deal with your Wegener's?
    Below are some ideas to get the communal brainstorm churning.

    Disease:
    Diagnosis
    Date of diagnosis
    Age at diagnosis
    Family history of AI disease

    Meds:
    what kind
    daily reminder
    reminder for next purchase
    supplements

    Doctor's Appointments:
    Dates
    Transportation to and from
    Who's coming with you
    Questions to ask
    Notes from doctor's visit
    What specialists are you seeing

    Cost:
    meds
    getting to and from doctors appointments
    parking
    homecare
    living aids
    therapies
    special foods

    Food:
    special diet requirements
    delivery

    Work:
    time off
    family taking time off for support
    required paperwork
    human resources/bosses contact
    tax info for later deductions
    retraining for new line of work

    Symptom tracker

    Physical rehabilitation

    Emotional/Psychological rehabilitation

    Support groups and contacts

    ... and of course have the option for more than one disease since as we all know, if you have one autoimmune disease, then you're more likely to acquire another flavour of AI disease.

    So there. Here's the start and idea fodder. I have a few thousand dollars to play with from our foundation, and I'd love to use it wisely so that we can start getting the attention we need to further our cause (that being a cure.) Unlike many charities that make a business out of being a charity, I'm actually looking towards finding a cure and giving the people working for charities an opportunity to find something different to do - save animals, or feed the hungry, etc. I want to see autoimmune disease eradicated, and at this point in my life, I think this might be a good way to start the process.

    Peace out y'all. I can't wait to see the brilliant ideas to follow.

    Much love.

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  3. #2
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    Ditto to all of the above. Great idea, marta.

    I would also add the following:

    * Results of blood tests with tracking of what needed to be tracked.

    * Scale for disease activity: it should include specific symptoms for each AI disease and an option to rate them and get some results about the disease activity.

    For example, our scale might look like that:

    How much do you have the following symptoms, rate from 1-5:

    Nose bleeds
    Nose crusting
    Joints pains
    Ears infections
    Coughing without production
    Coughing with productions
    Shortness of breath
    Difficulty in breathing
    Gum bleeds
    Red eyes
    Scleritis, episcleritis
    Fatigue
    Rash
    (I dont know what the symptoms are for kidneys involvement because I dont have it, need to add here)

    Each one can make at first his own scale for flare, smoldering and remission and then can check from time to time. (Some for example still have nose crusting while in remission and for others it can be a sign of a flare)

    * diary of symptoms. You mark one when you have it.

    * warning of the app when you collect too many symptoms.

    *prayers.

    So glad to see you here, marta. I missed you.
    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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  5. #3
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    Love it! Thanks Alysia... those are great additions.
    I miss everyone on here as well, but I've been engrossed in trying to get back to normal since my flare last April, and then subsequent Pulmonary Embolism. I'm off the pred - yaaa-friggin-hooo!!!! but my oxygen saturation is still hanging out in the 'suck wind' department. This too shall pass. In typical form, I want to focus on something bigger than me (which tends to make me better) and this is a great place to start.

    Peace.
    m

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    Hey Marta, welcome back

    Gosh this is way above anything that my brain could fathom, but you and Alysia seem to have a grip on it.

    In reply to Alysia's blood test tracker, an easy to read graph of results from one test to the next or year to year etc. (maybe this is what Alysia has just said )

    Emergency phone contact numbers

    Blood group


    I'm glad you are off pred, and hope that you have continued improvement
    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

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    Hey Michelle,

    I like the graph idea. I know many patients aren't as 'keen' as us, I was just talking to an acquaintance last night who had a heart attack a few years back and he doesn't even know the meds he's on... he said to me that I look great, and I told him that it's funny how no matter what you look like, you always look great after a bout of heavy pred, to which he replied, "who knows, maybe I'm on pred" to which I felt like saying, "oh, you'd know buddy" but I kept my mouth shut. Ha ha. But I think it would be good to have everything in the app for both the keeners and the blind instruction followers. Who knows, maybe an app would make the latter more involved with their healing process.
    And yes, emergency phone numbers. Maybe we could do it so that it has a medi-alert function when your phone is on lock screen with meds and condition and emergency contacts. I like that idea.

    Now changing topic to 'continued improvement'

    Brian got me an electric-assist mountain bike for Christmas. The best gift I've ever ever ever gotten (aside from my kidling). I've managed to put on over 500km on it since mid January. I can also go and bike with my husband again, which is what we did before I got sick. It was our first date actually, a mountain bike ride together. It increases the output of each pedal stroke, so there is no free ride with it, just a faster ride for the energy output. I can keep up now, and hills are not an issue. We've been riding mostly on the roads, with only a couple of actual trail rides(on snow), but I can't wait to get on the trails once the snow melts. Like I said, best gift ever. It's gotten me out of my pulmonary embolism funk, and outside, and moving. Talk about therapy. The continued improvement continues.

    P.S. Here's a good photo showing how you'd know you're on pred.
    IMG_2929.jpg
    Ha ha ha ha ha.
    One month and a half difference.
    Last edited by marta; 04-08-2017 at 11:53 PM.

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    A bit of your idea mimics the Health app that comes pre-loaded on an iPhone 6.

    The pred photos are, well, um, striking, I guess...
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Ha ha Pete, 'striking' is a good word for that. Today I call it hilarious, at the time it was more along the lines of annoying. I am almost back to normal - in the face anyways, the body is still trying to catch up.

    My ultimate goal with the app is to gather data. It seems the medical profession isn't much interested in working together to find a cure, aside from a few small but significant islands of practitioners, so this could be used to both help the patients, but also help the objective of finding a cure by working together. I have used that health app on the iPhone, and I find it quite lacking. I also use another one that you can alter based on your needs - lumentrails- but the magic of the one I'm dreaming of is that it can have a place to store the unpersonalized data and then the next steps are the truly exciting ones. I get ahead of myself quickly. Ha ha.
    Last edited by marta; 04-09-2017 at 05:34 AM.

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    Hi Marta...its Always good to hear from you. Glad to hear you are off the pred. Boy what a difference a month makes !
    The app sounds like an awesome thing ( leave it to you.. I believe YOU will find the cure !)

    I don't know what else you can add,it seems like you have just about everything covered..but I will reread it again and let you know if I think of anything. Stay well my friend and keep on pedaling ! Hugs
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Quote Originally Posted by Debbie C View Post
    Hi Marta...its Always good to hear from you. Glad to hear you are off the pred. Boy what a difference a month makes !
    The app sounds like an awesome thing ( leave it to you.. I believe YOU will find the cure !)

    I don't know what else you can add,it seems like you have just about everything covered..but I will reread it again and let you know if I think of anything. Stay well my friend and keep on pedaling ! Hugs
    Slight edit: ( leave it to us.. I believe WE will find the cure !)

    I know right, a month on 50mg pred is quite something. This time though I was aware enough to take photos as it got bigger and then smaller. So I'll put them together and post them here so that people can see that despite the full on grossness, you do come back. I've also learned some good lessons on this last flare. Some nugget of gold in everything, no matter how crappy. I'll share the last lesson learned in a new thread. You just reminded me.

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  13. #10
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    Quote Originally Posted by marta View Post
    Ha ha Pete, 'striking' is a good word for that. Today I call it hilarious, at the time it was more along the lines of annoying. I am almost back to normal - in the face anyways, the body is still trying to catch up.

    My ultimate goal with the app is to gather data. It seems the medical profession isn't much interested in working together to find a cure, aside from a few small but significant islands of practitioners, so this could be used to both help the patients, but also help the objective of finding a cure by working together. I have used that health app on the iPhone, and I find it quite lacking. I also use another one that you can alter based on your needs - lumentrails- but the magic of the one I'm dreaming of is that it can have a place to store the unpersonalized data and then the next steps are the truly exciting ones. I get ahead of myself quickly. Ha ha.
    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.
    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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