A Word From Seenie

We know. Right now, it just seems like bad news and more bad news, doesn’t it? And yet in some ways, we are fortunate to be rare disease patients. One of those ways is that we are part of a global Ben’s Friends community where we can go for understanding and empathy. Within this community, we talk openly about things that really matter to us and to our families. No annoying religious or political arguments, silly memes or lame jokes. And no judgment. We share, we compare, and we support each other, even though most of our community friends are known to us by screen name only.

Membership in the rare disease “club” does have a few benefits, and our membership in this community is one of them. Log in, drop by or stay awhile. Offer a kind word. Support someone who is struggling. Reach out for a pick-me-up yourself. The special bond of friendship is here, and this thread is open for your comments.

Stay safe and keep well

Seenie from Admin

PS wash your hands! https://youtu.be/-LKVUarhtvE

If login isn’t working for you, getting back into the community is easy:

Your “User Name” is your email address.

Then say you’ve forgotten your password (even if you remember it).

Follow the instructions. And there you go.

Welcome back!


Seems kind of quiet on the site, so thought I would pop in and say “Hi”!
Hope you and everyone else are doing okay! We are so used to being on the “frontline” on guard against infection and germs it is almost second nature for us, one of the reasons I I was already totally prepared with N99 masks, hand sanitizer, nitrate gloves, a habit of not touching my face when I am out in public, etc. Everyone else has to play catch up to us.
I am in lockdown, self quarantine, living in a community, is tricky, as if one person spreads it everyone gets it, so decided to go it alone in my trailer, luckily I am self sufficient. At some point, I will need to get supplies, even though I bought quite a bit of food, I will need to get medications, class 2 that have to be in person, but not for another week.
I have a feeling this is going to be getting worse in California before it gets better! The selfish young people cannot stay home, they have to go to the beach and party, so COVID19 will wipe out some of the population, I am going to be holed up the entire time!
Good luck to whoever sees this, and to Seenie!


Thanks, Jon! Hope you are coping well in your trailer. At least it’s warm where you are!


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Thanks, now I am on the construction site, at our place, wish me luck! I am being careful, see photo on other thread.
Still trying to work out the logistics of having a car assigned to me, that I can keep clean, if I need to get medication or supplies, the administrator is playing power trips, does not take the virus seriously. But hopefully everything will work out.

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