AVM Survivors Network
www.avmsurvivors.org
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| Screenshot of the AVM
Survivors Network website. The
greeting: "We're AVM Survivors, Here
For Your Support," welcomes visitors. |
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One of the valuable aspects of the web is the ability
for people to connect with other people. Tools
such as Message boards, Yahoo! and Google groups have been
around for a long time. We have featured some
message boards and groups related to traumatic brain
injury in past website of the month articles and they
will continue to be around for the foreseeable future.
But the net evolves, and in the last few years and
social networking sites such as: Facebook and MySpace
have revolutionized
the web community by offering new social
networking tools such as personal pages, blogging, and
built-in applications for enhanced communication, and attracted
a mass audience.
Now people could create their
own communities and invite others to join them, personal
communication became instant, public and interactive. Not long ago Disaboom took
the concept of social networking and focused it
primarily for the disability community.
The kinds of tools and applications that enabled
social networking sites to change how people use the web
are
now available for groups that want to build
communities based on a single, common topic, and now we
are seeing the creation of these kinds of communities;
which
brings us to our website of the month.
The AVM Survivors Network is a social networking site dedicated to
individuals who have Arteriovenous Malformation (AVM)
and utilizes the social networking concept to provide
support and resources for a community of AVM
survivors on the web. It utilizes many of the
same tools and features that you'll find on MySpace or Facebook.
The site was started by Ben Munoz, an AVM survivor who
recognized a need for other survivors to be able to
support one another. Ben told us:
I started the AVM Survivors Network in
December of 2007, approximately one year from
my stroke and gamma-knife surgery. My goal was
to create a web community where people who had
suffered an AVM related stroke (or other
symptoms) would realize that they are not
alone in this. Others have been through this
and could offer advice plus kinds words of
support.
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And in creating AVM Survivors Network, Ben has utilized a social networking web architecture
to create an interactive, online community of AVM survivors
- the result is a site that offers members more than
simple message board postings, and encourages
individual communities of 'friends' to evolve.
The AVM Survivors Network is structured similar to
other social networking sites. The home page is designed
so visitors can see what has happened recently in the
site. That includes the latest activity, recent
blog and forum postings and links to the latest
comments members have left. There is also a
section for recent and upcoming events related to AVM,
a constantly changing photo slide-show and other
welcoming features you will discover when you visit.
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Screenshot of one of the AVM Survivors Network
members pages - the site makes use of social
networking tools to provide support and
information to individual diagnosed with Arteriovenous Malformation
(AVM), as well as family and friends. |
Navigation at the top of each page easily takes
visitors to other sections of the site which
include:
My Page, which is where an AVM survivor, or family
member or friend of a survivor can sign-up and become
a member.
Members, is a section that lists the community's
members, most elect to use a personal picture and
others use avatars to represent themselves, clicking
on their image or name will take you to individual
members personal pages. Like Facebook or
MySpace,
members have the ability to use different themes or
layouts as well as tools to customize personal
pages. Many member have personalized their pages
to reflect themselves. Members can post their
own blogs on their pages and others can comment back
and continue a discussion. You will also find a profile
of the person and pictures.
Forum, is like a traditional message board where
members can post questions or talk about their
specific situations, or treatment and of course other
members can comment and offer information and support.
Photos, the AVM community is not shy about posting
photos and their are a lot of them on the site -
individual photos as well as photo albums contributed
by members. If you are someone with AVM or
a family member or a friend of someone who is diagnosed with AVM
and you find your way to the AVM Survivors
Network, the
photo section is quite an important tool for support. You
see images of survivors continuing to live their
lives, going for treatment, in the hospital post
surgery. You also see family and friends,
parents, spouses, children, extended family, close
friends, co-workers, even pets. And because AVM
in the brain can affect other parts of the body and
because AVM can occur in other regions of the body you
also see images of some of the member who have changes
in their physical appearance caused by AVM. You
may also see images of AVM survivors immediately
post-surgery, some with significant surgical
scars. But the message from these images is
positive and clear - AVM is not going to stop people
from living their lives, from being wives, husbands,
workers, dads, moms, daughters, sons - not prognosis,
outcomes, scars, physical or cognitive changes. That is a
strong message for people newly diagnosed and their
loved-ones, and not just a message of hope but also of
determination.
Not only is that message of hope and determination
communicated from photos but also in the threads of
conversations among the members. The AVM
community is a supportive one. As we have noted
in other articles, there is a lot of wisdom and
knowledge from survivors and family and you will find
that here. That wisdom comes in people relating
their own experiences to others, encouragement, and
support. It comes from people who have been told
there are no more options for them and others who had
been told the same thing but got other opinions, and
researched new treatments, or someone newly diagnosed,
or someone scheduled for surgery - and the replies
back from people who have experienced the same things.
AVM is a condition that can be very complicated to
treat and in some cases it can come back. After
treatment, whether radiation or surgery, survivors can
experience cognitive impairments, memory issues,
headaches, vertigo, physical and functional changes,
depression and other neurological, physical and
emotional effects - it is a lifelong condition.
And sometimes people don't survive AVM.
Given that, the members of this unique and important
web community continue to live life, and offer
their support to fellow members. Ben Munoz
noted: "We have created a close community
through the AVM Survivors Network - it's become like a
family and the feedback I receive from the members
attest to that."
Some of that feedback includes comments like these:
I do love my new BIG family! I have to
admit that without this site I am not really
sure who I would turn to. I was getting really
down in the dumps and thinking that life was
going to be too hard and that no one I could
talk to would understand what I was and am
still going through. I'm so thankful for this
site...I really do feel like it saved me!
I love this site. Even though my AVM is a
little different than most on here, I still
feel completely accepted and supported. And of
course understood.
Ben, you have done more than you could ever
imagine. Your community here has given hope,
security, friendships, care, and comfort to
everyone here. I can say that you and everyone
out here has made me a better person. You all
have given me strength. You all have seen me
through my darkest moments. You have given me
a chance to share my life and help others.
What would I do without you and my community
here? I cannot thank you enough.
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Before the web unless someone with AVM lived in an
area where there were other survivors and if there was an
organized support group or system of support, people would be
isolated. The web changed that to allow people
the ability to connect with others no matter where
they were and the comments above illustrate the value
of online social networking communities like the AVM Survivors Network.
The AVM Survivors Network takes the tools of social
networking and creates a new level of support and
interaction. The AVM survivors in this community
will impress you with perseverance, determination,
advocacy skills, acceptance and openness.
If you are newly diagnosed - the AVM Survivors Network
should be one of your first stops on the web. We
are happy to make our visitors aware of this great web
resource as our site of the month.
They are just a click away and don't forget to
bookmark the AVM Survivors Network so you can easily
visit them again.
Arteriovenous
malformations (AVMs) are defects of the
circulatory system that are generally believed to
arise during embryonic or fetal development or
soon after birth. They are comprised of snarled
tangles of arteries and veins. Arteries carry
oxygen-rich blood away from the heart to the
body's cells; veins return oxygen-depleted blood
to the lungs and heart. The presence of an AVM
disrupts this vital cyclical process. Although
AVMs can develop in many different sites, those
located in the brain or spinal cord-the two parts
of the central nervous system-can have especially
widespread effects on the body. Source: Medicinet
Social Networking: A social network
service focuses on building online communities of
people who share interests and/or activities, or
who are interested in exploring the interests and
activities of others. Most social network services
are web based and provide a variety of ways for
users to interact, such as e-mail and instant
messaging services. Source: Wikipedia
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Further Information:
Disclaimer:
Reference in this web site to any specific
organizations, commercial products, process, service,
manufacturer, or company does not constitute its
endorsement or recommendation by Northeast Center for
Special Care.
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