Yes, we have a public health crisis. And as rare disease patients, we are “at risk”.
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 in America and another 30 million in Europe. Washing our hands, buying toilet paper and hand sanitizer just don’t cut it.
Well-intended statements from health and government officials, meant to allay fears in the general population, can increase anxiety in ours.
Instead of getting mad, let’s 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
Connect with your Ben’s Friends community
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.
When nobody else gets it, we together do.
Take advantage of what your Ben’s Friends team has done for you
As our care systems are becoming strained, the person you end up seeing may have no knowledge of you or your disease.
Your Ben’s Friends Team has partnered with Backpack Health so that you can consolidate your health information and records in one safe, secure, password-protected online location.
You will be able to share essential 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.
To have a general overview of Backpack Health, take a look at this short video.
Check this site to join Backpack Health
The join up site is now live: https://my.backpackhealth.com/join/bensfriends.
Click on the button at the upper right corner of the page to join.
Questions, Questions. And Some Answers
Here are some questions you might be asking and the answers to them.
Q: OK, so if this virus is mild, why the big deal?
A: Someone carrying COVID-19 is contagious for a long time before they find out. Yes, only a small proportion of people are at high risk for serious effects. But if they all need care at the same time, health care facilities and staff could be overwhelmed and not be able to provide the potentially life saving treatment that those people need.
Q: What does it cost to sign up for this Backpack thing?
A: Nothing. Nada. It’s free. To understand how it works, though, you should go to the Backpack Health website and look around.
Q: Gimme a break. I can hardly get my head around Facebook! I don’t stand a chance of catching onto this.
A: It’s easier than you think. And Backpack has online chat/help.
We will also do our best to answer your questions. Email us at firstname.lastname@example.org.
Q: Maybe I don’t want to share all my medical stuff with the triage person at the ER.
A: You don’t have to. Backpack lets you organize your medical information in a way that keeps you in control of who-sees-what at all times.
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.