Social media provides tools for discovery: how to find value in social networking.
If you're just getting started, focus on social networking's function rather than form. Think of it like the dining room table that separates you and your family at mealtime. Some tables are fancier than others, but when you are engaged in conversation you are unlikely to notice the table is there. Even though you are physically at the table, eating on it, talking with others around it, and sometimes excusing yourself from it, you never pay attention to the actual table. Social networking technology is like that; it is simply a way to gather for conversation. However, instead of a few people around the table there are millions, including leaders of disease advocacy organizations and parents of children who have the same diagnosis as your child. There are even groups for children with no diagnosis. All this is at your fingertips.
Why would I add another item to my to-do list?
The value of social networking is in finding online communities of which you want to be a part. Dean Suhr, founder of the Metachromatic Leukodystrophy (MLD) Foundation, says "To find them, start with what you know how to do. Even if you're not familiar with the Internet, it's worth the effort for those with rare disease or special needs to find others like them with the same disease or disability."
Had it not been for Dean's online presence--the MLD Foundation is easily found with a Google search and offers a listserv for members--two families in Iceland with MLD who live only one hour apart never would have connected. They are now each other's best support system. Dean shared that "If you encourage yourself and others to participate in online dialogue, it's overwhelming how small the world becomes, and it's reassuring to know that you are not alone."
The value of community is in asking, learning, and belonging. Like most things, it's important to remember that you can get more out of social networking than what you put in, but you have to be willing to contribute.
As the Internet and other social media technologies continue to grow and evolve, the distance between our physical and digital lives is blurred, and people spend most of their time learning, playing, and communicating with each other on a global scale. According to the Pew Internet and American Life Project, 62% of adults utilize social networking capabilities. Of those, 41% read someone else's commentary or experience about health or medical issues on an online news group, website, or blog, and 39% use a social networking site to follow their friends' personal health experiences or updates, post their own-health related comments, receive information, or join a health-related group. Moreover, Google is used for two billion searches daily, a large percentage of which are health-related, Facebook has more than 500 million active users, and over three million tweets per day are shared on Twitter.
Where do I begin?
For those who want to engage in an online community or gather information, stick to web and news searches, applications like "Google Reader," and credible blogs. If you want to interact with others like you, sign up for Facebook. If you feel compelled to share and amplify your information over a wide network, set up a Twitter account. But don't feel pressured to jump on every new trend. Google+ is new and exciting, but don't expect to find useful health communities on it just yet.
After deciding where to start, your social media presence will depend on how much effort you are willing to put in and how much time you have. If your child's just been diagnosed, you may want to search Genetic Alliance's Disease InfoSearch (http://www.geneticalliance.org/diseaseinfosearch). This first stop in your web search may lead you to the web page of a support group that lists all the social media opportunities they offer in one place. Or you can go directly to Facebook or Twitter and see what people are saying in real time about the condition you are interested in. There is no single method or path to finding value in social networking, and that's what keeps it exciting.
Newborn screening is a public health service that identifies babies with certain genetic conditions soon after birth so they can be connected to a system of treatments, services, and support that greatly improves their health outcomes. The more than four million children born annually in the United States receive this population-based screening, and though most are found healthy, thousands are diagnosed with various conditions as a result. This is a great benefit to these babies and their families. The process is simple: After a child is born, a health professional will prick the newborn's heel and place a few blood droplets on a special card that is then sent to a lab for testing. The health professional will also place a small earphone or other device in the baby's ear to detect any hearing problems. Newborn screening and early identification of health conditions can be the difference between a child's healthy development or a series of events that can lead to significant health complications and challenges for the child.
What's at Stake?
Jana Monaco gave birth to her third child Stephen in 1997 at a Virginia hospital. At that time, Virginia only screened for nine genetic conditions at birth. Stephen had a happy and uneventful first three years, but on May 30, 2001, Stephen was rushed to the emergency room. He had gone into "metabolic crisis", caused by a harmful build-up of toxins in his body, which resulted in severe disabilities. Doctors diagnosed him with Isovaleric Acidemia (IVA), an organic acid disorder. His parents could not have predicted Stephen's diagnosis: as there was no family history of the condition, his parents were unaware that they both carried one non-working copy of the gene associated with IVA. Today, all states screen for at least 29 conditions at birth; some state newborn screening programs screen for more than 50 conditions. Thanks to the work of tireless parent advocates like Jana Monaco and condition-specific advocacy organizations, one of the 29 conditions included in all state screening panels is IVA. Children born with IVA today are identified days after birth so that doctors can begin treatment, which in the case of IVA is a modified diet and supplements to prevent the harmful build-up of amino acids, a product of protein metabolism.
A Network of Help
Previously, families of children with conditions not included in state screening panels would find themselves on a diagnostic odyssey--navigating a long and uncertain road driven by symptoms that required visits to various health professionals. Once these conditions are added to the state panels and therefore identified more rapidly, these children can live long and healthy lives with coordinated services. Newborn screening is the crucial first step in a process of connecting families of children with genetic conditions to a system of providers, treatments, therapies, and community-based support networks and resources. Newborn screening for hearing loss provides such an example of this process: after a child has been identified with congenital hearing loss through the newborn screen and subsequent confirmatory hearing test, the family enters a system of early intervention and special education to ensure the best outcome for the child. Parents are encouraged to make informed decisions with their care providers about technologies or medical interventions as well as language and support services.
We Still Have Work To Do
Families who have a child diagnosed with a condition as a result of newborn screening have a long road ahead: new parents often do not anticipate having to respond to a health challenge in their growing family. Even though the conditions on state panels have an associated treatment, following care instructions, identifying various specialists, and collaborating within the medical team (also known as long-term follow-up) can pose challenges. Parents must feel supported emotionally and a part of the decision-making processes that will come up during their child's life. As states feel the strain of shrinking budgets while also serving an increasing population in need, the followup support states will be able to provide after newborn screening remains unclear. The role of disease support groups remains important and is growing. Further, the number of conditions each state includes in its newborn screening panel varies--in the case of Stephen Monaco, if he had been born a few hours south in North Carolina, his IVA would have been detected at birth. While now each state screens for 29 conditions, as stated earlier, some states screen for over 50. These discrepancies among the states make a significant impact in the lives of babies born every day--do you know how many and what conditions your state screens for? Many expectant parents today have never heard of newborn screening and that is something that needs immediate attention and remedying.
In September 2011, Genetic Alliance (www.geneticalliance.org) will launch a new online newborn screening resource entitled BabysFirstTest.org. This resource will be a one-stop-shop of educational information on this crucial public health service for expectant and recent parents, the public, and the healthcare and public health professionals serving our nation's newborns, among many others. BabysFirstTest.org will include facts about newborn screening, information on genetics and family history, state and condition-specific information, and much more.
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|Title Annotation:||Genetic Alliance|
|Author:||Petruniak, Mark; Krokosky, Alyson; Terry, Sharon F.|
|Publication:||The Exceptional Parent|
|Date:||Sep 1, 2011|
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