Heads up! Happening soon

One day soon, you will point your browser (or your DiscourseHub mobile app) in the direction of www.livingwitheagle.org and there you’ll be … in a completely different place!

Well, not completely different: the page on which you’ll find yourself will be the new landing page for this community. From there, you will simply have to click on “Community” and you’ll be on the old familiar page again.

So why are we doing this? Well, there are a few reasons:

  • We want to give a first impression of a community that is dynamic and welcoming to newcomers, something that we’ve heard that the home page doesn’t always do.

  • We’d like to attract more people to this community because our mission is “to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them”.

  • We hope to make this community more easily “findable” by the people who need it. To make it findable, we need a home page that Google and other search engines can zero in on and rank highly. (In the “biz”, that’s called “SEO”.)

We hope you like the new page when you see it. If you have any comments or suggestions as our designer is in the final stage of the design, we’d love to hear from you. (For that matter, we always love hearing from our members!) Simply post below, or email us at modsupport@bensfriends.org.

TJ and Seenie


Thanks for the heads-up! Is there a new location for the latest surgeon’s list? I tried a couple of old ones but got errors.

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Thanks for the thank you! (Sounds silly, but we don’t get so many of those. When someone does say thank you, it MAKES OUR DAY! )

I’m not one of your regular mods, but @Isaiah_40_31 or @Jules will point you in the right direction. They will get a copy of this message.

Have a great day!


This is our current list, Chromechaser66 -

Thank you my ES friends for all your advice and experiences. I met with Dr. Hackman in late June 2021. We have scheduled bilateral surgery for my styloids on August 11, 2021. I still need your encouragement and your input. Thanks so much.

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That is great news Dcau. So glad you have your surgery date set. Please let us know how you need us before & after surgery. We are here for you! :hugs::heart:

That’s good news, not too long away! Will pray all goes well! Lots of info on here about what to expect after surgery, but I guess you’ve probably already read up :smiley:

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The best of luck with your surgery. Hope all goes well. Your ES friends would love to hear from you afterwards to get your advice and hear about your experience. :pray:


Once again I turn to my ES friends, with each passing day, pressure is building up in my nose , ears and throat. It is hard to eat and swallow. It feels like when I eat the food is backing up in my nasal passage. Breathing is sometime difficult. My surgery is scheduled for August 11. Has anyone else experienced this.