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by Monsterhigh1

I was so excited when I found this app because I have multiple debilitating illnesses and it’s difficult to find others who have the same or similar illnesses. However when I went to join my first community, it was making me jump through hoops by answering over 50 questions just to get started (and over 60 in some of the more common illness communities). This wouldn’t have been a huge deal whatsoever if I only had one illness, but I have several illnesses and had several communities I was excited to join but I would have had to fill out hundreds of questions by time I joined them all.

I understand wanting to have people prove the validity of their illness so not everyone who doesn’t have the illness/care for someone with the illness is joining, but over 50 questions is a bit much, if not rather insulting, since you shouldn’t need to answer dozens upon dozens of questions to prove you’re not lying. It looked like a very well designed and thought out app, but you shouldn’t have to answer so many questions just to get in. A handful of specific questions would have sufficed such as when were you diagnosed, what are your symptoms, etc., etc.. The questions weren’t anything hard, but just extremely time consuming if you’re joining multiple communities.

by Zerø L

The idea is awesome. It’s full of great little communities and I love the research aspect of it. But there are a few issues with the UI. For one, you can’t go to your profile and view your posts and you don’t get notifications in the app itself. When you post a poll, you can’t view the notes (aka comments) and it disappears entirely from your view unless you check your email, basically making it basically useless. The same goes for posts. It’s incredibly hard to search through the list of posts as they are sorted seemingly randomly, and there’s no option to sort by newest.

I think this app could genuinely become one of the best support systems for disabled people, if only it acted more like other social medias.

by Jc974493

I was a bit skeptical because of the overall meh reviews, but after looking through all the 1 star reviews I wanted to give it a go. I absolutely love the app. They do have a privacy agreement. The information is safe and nothing is shared within the communities without consent, and information isn’t sold. The surveys are admittedly long, but I love that! Having THAT much more detail and overall information for every condition is so important to find trends in what most likely will or won’t help with treatment/pain/symptoms. I don’t know anyone else personally who has CRPS, so having a little community of people to view shared symptoms and feelings about the condition, as well as seeing how common depression/PTSD was as a comorbidity, made me feel a bit of relief. The user base is admittedly limited simply because of the amount of users putting in their info isn’t massive, but you can still find overall trends for most efficient and most common treatments. The #1 most effective treatment was one I had considered in the past, but ultimately decided against. I plan to revisit it now after seeing how it has made a difference for others, because any relief with CRPS is huge. Again, I love this app. It will only continue to improve as it grows!