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.
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.
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.
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.