Hearing Zebras – A New Mobile App?

I’ve noticed that there a number of apps out there for people with disabilities, but the only ones that are built towards a specific condition are never quite right for people with EDS.

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So, as something to keep my toe in the water, and tbh something to create a foundation for a backup for long term employment, I thought I’d do it. The question is this:

What would your ideal Ehlers Danlos App allow you to do / record / monitor?

Answers on a postcard. (Or more realistically, in the comments?)

Initial thoughts – photo based Beighton test?

Doctor appointment printable  (you enter notes & images and it creates an easy to read list of concerns for your Dr with sections to record their answers because, well, brain fog.)

Don’t touch me button – if you need help, a button press will speak for you and explain your diagnoses and how to help you best.

Edit: so, I’ve started the basics of the app & design. Tonight was figuring out a sort of design and got the text to speech working (much more to come), but this is what it looks like:
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9 thoughts on “Hearing Zebras – A New Mobile App?

  1. I think essentially it could be an excellent idea. Do check out the legality of the app as there is criteria that needs to be adhered to.
    It would be great to see, although not immediately as it would take some doing, a space for professionals to have access to, where they might me able to give their thoughts or advise. With this in mind the security of the app would be very important.
    There are already apps where you can record your symptoms, but as you say they are not directed at the EDS sufferer. Managing meds I’m not quite sure about but a list of medications that EDS patients use would be great as at the moment we all rely on our clinicians to dispense our prescriptions and unless you happen to hear about a med that someone else is taking most of us probably don’t know that it’s exists.
    It would also be interesting to have an area where other illnesses linked to EDS could be discussed. For example I have Sjogren’s syndrome, Lupus and EDS.
    I have plenty more ideas so I hope that you are able to get it up and running in a accurate and professional way.
    Good luck.

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  2. This is a very good idea! What I would personally like in an app if I were to use for for managing my EDS-HT exclusively:
    1. Pill chart/ appointment reminder
    2. Exercise (names) reminder like a chart maybe with the list of exercises I am currently following – editable. Perhaps a timer function?
    3. A pain or sleep or injury or symptom journal or a dated note saving function
    4. A way to connect with other zebras – like a smile zebra (instead of smile mom). Where I live right now, I do not know a single person with my diagnosis. I also move across countries frequently. I would love to be able to connect to more people with EDS-HT on the mobile, locally and also internationally. My dream is to have a playdate for my child with another child whose mom is a zebra, and who “gets it”.
    5. A platform for shared knowledge – be it tips or resources or health professionals.

    All the best!
    Viv

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  3. Pingback: Expect Zebras : An App For EDS – First glimmers of a something | The Hippy Geek

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