People's stories

Does anyone know if you can still read people’s stories like you could on the old site? I sure do miss that. Every time someone would join I would read their story about their AVM and how they found out about it. I used to get on this site basically everyday, but not so much now. Just every once in a while to see if anyone has asked a question that I might be able to give insight on.

Melissa, Hi.

We encourage newbies to post their introductory stories in the New Member Introductions category of the site.

What I find is that if I use my tablet in portrait layout, it gives me one view of each page and if I use it in landscape layout, it alters it slightly. One of them allows you to scroll back through old stories; the other just shows you the latest page of stories. So if you want to go back further and you’re using a tablet, try turning it the other way.

The moderators always try to make a play to ensure everyone in the New Members gets a welcome but it is much better to have a wide contribution from across the membership. I’m quite sure that many members read a lot of posts but many fewer reply… I’ve got you in the regular contributor group, though!

Have a look in that section and see how you get on.

In the same way, if you navigate into one of the other categories, you can see a longer history of conversation than shows on the home page.


I joined this site in July 2012. This site is, and appears very different now than when I joined. My feelings and thoughts are that the original site was much “warmer” feeling. The site currently feels cold to me.

The original site appearance and layout also gave me a much more personal feeling.

We also had a great section for people with cavernous malformations.
If I’m not mistaken, we also had a “Search” function that was very useful.

I’m very sorry for saying these things but your comment made me feel like expressing something I’ve felt for a while.

A post was split to a new topic: Your Profile


I think a lot of people enjoyed the old layout – and I found some copies of old style pages on an internet archive site a month or two ago and I can see how it was more tailored than the rather out-of-the-box Discourse platform that we now have. However, the information that the Ben’s Friends team tell me is that we really had to migrate to a new platform, as we risked losing all of the posts.

There is still a good search facility… you can find it by clicking on the grey magnifying glass on the green banner that has your “icon” or “avatar” on. Top right corner. Again, it is an out-of-the-box search facility which is a bit of a strange looking thing but it seems to work well.

If you ever want to see your old posts, or those of another member, you can click on your icon/avatar. A window pops up with summary information. Click again on the icon/avatar in the pop up and you go to your profile. To see all your posts, select the “Activity” tab in that view. To see for someone else, click on their avatar instead.

The pages within the site are certainly more limited than the old site but they do a good job of providing a sound blogging / support platform at a sensible price.

I hope you can get a bit more comfortable with it. It’s great to have you in the community.

Best regards,


Hi Richard

Thank you very much for taking the time to communicate with me. Its
greatly and sincerely appreciated.

Early on, when I was completely lost, at a low, and needed the support
the most, I found both AVM Survivors and GPN support networks. (both
Bens Friends) Both became very dear to me, and a part of my life.
These sites still mean much to me, as do the members, so I continue to
visit the sites and occasionally interact when I have time and
something to offer.

There are some members that are either are no longer with us, or that
no longer interact. I miss them.

Visiting and seeing other member comments often humble me, as no
matter how challenging is life might be for me, I can see that others
have had a harder road than me. I also will never forget how lost I
felt and the fear I was carrying when I first visited and joined. When
I see new members expressing the kind of fear and feeling lost or
without answers, I very much understand what they’re going thru.

These sites will be in my life till I’m gone. They’re precious to me.

Thanks again Richard. I really do appreciate you, your time, and our
family of members.


1 Like


I feel the same. For me, I know how I felt when I had my confirmed diagnosis. I really did lose it for a while. When I look back at my first posts, this doesn’t really come across but I know how I was feeling. It is this that encourages me to welcome new members and tell them “we all felt like you. It does get better”.

It is great to be a part of a community of friends, stretching round the globe. In some ways my life is much richer for all that I learn on here and the interactions I have with people. I hope I pass some of that on.

It’s great to have you in the family, Ed.