Design Stage Feedback

[Debbie C]

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

[marta]

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.

[Alysia]

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

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Or

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Another:

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I have some more

[whatthewhat]

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.

[marta]

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!!!

[mishb]

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

[marta]

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.