Yes, we have a public health crisis. But if you’re like us, you are very tired of the hype, the political posturing and the social media frenzy. More than that, though, we are MAD.
We are all here at Ben’s Friends because we have a rare disease, and many of us are part of that ominous “at risk” population.
Being marginalized as a rare disease patient is nothing new to us. But this time is different. There are 7000 rare diseases that affect 30 million Americans alone. Washing our hands, buying toilet paper and hand sanitizer just doesn’t cut it. Well-intended statements from health and government officials, meant to allay fears in the general population, can increase anxiety in ours. Are we feeling the stress? You bet.
We are all preparing in our own way. It’s important to be proactive:
-
Be prepared: considering the future today is the best way of avoiding chaos tomorrow
-
Have your solution ready before the problem happens
-
Use innovations
-
Be flexible
-
Strive to understand why things are happening as they are
-
Roadmap the future
Over the next short while you will be receiving some messages from your Ben’s Friends Team on how to use innovation to help you be proactive and be prepared in the event of exposure and/or symptoms.
Now is a good time to reconnect with your community even if you have been away for awhile. Doing well? Give some support and encouragement to others! Need support? Your Ben’s Friends community is the place to be. Either way, we can help each other. When nobody else gets it, we together do.
Getting back to innovation and being prepared, here’s one that you will be able to start using right away. Be ready with the solution before the problem happens. Here’s what your Ben’s Friends Team has done for you:
We’ve partnered with Backpack Health so that you can consolidate your health information and records in one safe, secure, password-protected online location. You choose the health information that you feel is essential, and you place it in that protected location.
You will be able to share your information with whomever you choose: health care providers, hospital staff, test centres, triage personnel. They can, with your permission, download it, and use it to provide you with the health care services that you need and deserve. Your Ben’s Friends team has also pre-loaded an “emergency share card” which explains that, as a rare disease patient, you require special care.
Have your solution ready: as our care systems are becoming strained, the person you end up seeing may have no knowledge of you or your disease. On the spot, whether you are feeling up to it or not, you will be able to tell them what they need to know, so that you get the special care that you need and deserve.
The join up site has gone live: https://join.backpackhealth.com/bensfriends More instructions will be posted in your community’s “News” section. (Home page, left hand side.) You will get notifications and more information in a few days.
We urge all of you to be proactive and take advantage of this opportunity. Maybe you won’t need it. Meanwhile, being prepared and proactive and having your solution ready before the problem happens will give you some peace of mind. And goodness knows we all need that.
Your Ben’s Friends Team