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Eagle Syndrome - Online Support Group

Who’s going Backpack-ing with Ben’s?

You have a wallet, right? You wouldn’t think of going to the supermarket without it and telling the checkout clerk “OK, I’ll just run home and get my card” or “Gimme me a sec and I’ll call my banker for that info”. Of course, that’s ridiculous! And yet, a lot of us leave home all the time without our medical data at hand. When you think of it like that, it makes no sense at all, does it?

At Ben’s Friends we’ve always advocated that people should own and control all of their medical information. That’s particularly important for people with rare diseases and conditions. Hey wait, that’s all of us at Ben’s Friends!

Well here is what we’ve done: we’ve partnered with the people at Backpack so that members of selected — and eventually all — communities will be able to fill their very own Backpack with their medical information. Like a, well, backpack, you can take it wherever you go and always have your medical data on hand. Handy for doctor’s appointments, visits to the pharmacy and when you travel away from home. And heave forbid, in an emergency, it could mean the difference between a good outcome and a really bad one.

Here’s how it works. When you join Backpack through Ben’s Friends, Backpack gives you your own mini-website with its own url (web address). Then it’s up to you: you load up your virtual backpack with doctors’ names, diagnosis information, treatments and surgeries and so on. If you are in the US, the medical organization you deal will probably have a quick way for you to download everything they have. And here’s the best part: Ben’s friends will add your disease or condition-specific information to your backpack. And you’re set!

As part of your own personal Backpack, you can also include other family members, and those whom you care for. As if that’s not enough, if you travel to a place where the doctor speaks sketchy English, Backpack will translate the crucial information for them, in real time. What’s not to love?

You stay in control, and it’s your choice of what to share with whom. You can even build “share cards” for use in different situations. Your personal Backpack url and access code can be added to the home screen on your phone, just in case. Share the access to emergency information with sitters, a non-custodial parent or summer camp. Order a medical alert bracelet with your unique codes for use by emergency personnel. The possibilities, and the benefits, to us rare peeps are truly endless.

So far, we have Backpack set up for our Psoriatic Arthritis, Lyme Disease, Polyneuropathy and PSC communities. We hope to have the rest set up before the end of 2020. If, for some reason, you would like us to hurry up and get your community set up sooner or later, just drop us a line at modsupport@bensfriends.org. We’re always happy to help.

Do check out Backpack’s website and their informative videos!

Questions or comments? Send them to modsupport@bensfriends.org: we’ll be doing a Q&A column very soon.

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