Comment

Moderator Comment by Louisa on April 27, 2012 at 1:37pm

Hi Everyone! I really like the ideas we should add to the profile creation format that dancermom sent. Particularly that we should have a Profiles Updated Week. Good thinking, dancermom! I've seen people just profile once and then we never know if their treatment worked, if they are AVM Free, etc. I really like her ideas.

Comment by dancermom on April 27, 2012 at 11:14am

To improve the profile creation format:

I wish the "status" and "how was it treated?" parts of the profile page offered more choices.
1. Besides "active" and "obliterated," "dormant" and "recurring" would be useful choices.
2. For treatment, "embolization" is not specific enough to be helpful: "alcohol embolization," "Onyx embolization," "NBCA embolization," "embolization -- multiple agents," and "embolization -- other" would be far more helpful to our members.
3. Similarly, besides "gamma knife," other types of radiation treatment should be listed, like "Linac," "Novalis," "CyberKnife," and "Tomotherapy."
4. Finally, a message on the "create your profile" page saying that the more complete the information, the more helpful it will be to other members would be nice.

Comment by dancermom on April 27, 2012 at 10:59am

I wish we could have an "Update Your Profile" week. A lot of members create their profiles before getting treated and never come back to let the rest of us know who treated them, how they were treated, and how it went for them. Updating profiles is particularly important for Extremity AVMers, because there are so few of them (under 400), and those who are recently diagnosed are desperately seeking information on doctors and treatments.

Comment by just julie from the block on April 5, 2012 at 9:19am

Hi Again - Had a suggestion to add a section on the main page - if there's room - for "top 10" things like:

-http://www.butyoudontlooksick.com/articles/written-by-christine/the...
-http://www.strokeassociation.org/ STROKEORG/AboutStroke/TypesofStroke/HemorrhagicBleeds/What-Is-an-Arteriovenous-Malformation-AVM_UCM_310099_Article.jsp#symptoms
-"You are More Than You Know
You are not your car. You are not your job. You are not your bank account. These things are useful, and they help you to make your way through the world, but they do not define you.
You are not your problems. You are not your failures. You are not your disappointments. These things challenge you and can ultimately help you to grow, but they do not have to limit you.
You are the child who danced in the sunshine, the young person who dreamed of changing the world. You are the admirer of all the beauty around you, a spirit who cannot be tied down. You are the best that you can imagine, a bundle of possibilities yearning to be fulfilled.
The shallow, superficial things will define or limit you only to the extent that you let them. Pay attention to them, but don't give your life to them. You are so much more."
-Ralph Marston
-Don't Quit poem
-Resources, including health and legal
-etc.

"Everything is pointing to my learning to accept the now me, and letting go of the old me."
-Elizabeth

Moderator Comment by Swami Jim on February 2, 2012 at 7:08am

Hey! I have a suggestion! Just an idea, a thought! I'm online here every day, and often times I get online at 5 of Ben's friends that you can look at the list on the bottom/right here.

I'm members of; bafsupport.org, unitedwithdisabilities.org, crohnsdiseasen.com(my little brother has crohns), rarediseases.bensfriends.org and of course right here!

The list of the other diseases are allot in Ben's friends, now what would be the odds of taking a look, and chat with all of the moderators and pull together and get to know us! We could pull our resources and help each other. It sure would not hurt. We all have had some rather tough times and we all need a community!

Jim

Moderator Comment by Ninibeth Ramirez on September 15, 2011 at 11:14pm

Like the idea!!!!