A recent article, related to rare diseases, was published about something that many parents have known for years. With a child's diagnosis of a rare disease or syndrome, many parents head straight to the internet for answers. And, if they have no internet experience, they quickly learn and become masters at finding answers, resources and support.
Finding articles, reports and resources is great, but many are also looking for someone who understands their pain. Other parents, with children who have received the same diagnosis. It is not only important to have other parents to provide insight, but it sometimes helps to see the child. Reassurance that your child has hope for the future and that anything is possible.
Up until my daughter Kirsten was five years old, diagnosed with Prader-Willi Syndrome (PWS) at two weeks, my wife has handled most of her care. Then a change in my career gave me the opportunity to get more involved. Great timing, considering some of the changes Kirsten was experiencing. So I started my search and once I found Facebook, things really took off.
With the creation of the Prader-Willi problem & solutions exchange on Facebook by my friend Misty, and with the help of all my new Facebook friends, I was learning more than ever before. With every question, posted resource or link and with every personal story shared, Kirsten has benefited and I feel, that we are a part of a growing family that is the PWS community on Facebook.
In the past year I have learned from a doctor friend, a lot about social media marketing. With that knowledge I have tried to persuade more moms in the PWS community to Blog about their experience. There are already dozens of great Blogs and with every mention of PWS, awareness grows. Through friends, internet searches and search engine indexing, for popularity. Also, for those with simple video knowledge, there is YouTube (and others). I have my YouTube channel "faroutofthebox" (if I can do it, anyone can) where parents can meet my daughter Kirsten and view my favorite videos. Or check out the channels I subscribe too (links to other parents channels & resources). I even have a twitter and Linkedin account. Linkedin is more of a professionals network, but I have connected my Blog and promote PWS awareness in any way I can. With Twitter, I also promote my Blog... But I am still trying to make sense of Twitter.
So why is this important??? Parents are looking for real life to relate too, a shoulder of support in some ways. They need to see that life goes on and they need to see that even though our children have PWS, they are still all different with lots of potential. Along with that, with every parent who finds their way into the PWS community, their friends are added to the audience for raising PWS awareness, and as a result, potentially their friends friends. With greater awareness, more doors are opened to potential funding for research.
With everything we do, our goal remains the same, creating a better life for all of our children. One of my friends started a Blog called "PraderWilliVille", Janis's dream of the PWS community coming together as a family, in one real community. Many of us share the same dream and when a parent sends us a friend request, especially those with a child newly diagnosed with PWS, it is almost as if we have found a long lost brother or sister. We understand their pain, and we want to help them make the hurt go away. If we could reach through the internet and give them a hug... We'd be there! With hugs and to offer them our experience, our research & links and to say... "Welcome Home".
I started this Blog over a year ago to share what I have learned, experienced and to provide my insights (sometimes ramblings), but I also use it to "share only" that I am a Shaklee Independent Distributor. Not to give a sales pitch, but to let you know that if you have a need for high quality natural products... Vitamins, supplements, cleaning supplies, skin care, ect. I hope you will allow me to assist you. When it comes to my family, and especially my little girl who has Prader-Willi Syndrome, I trust Shaklee products to give me hope for the future.
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Terry Guinn, A Healthier You Too |
Treat your family to the quality products they deserve. Shaklee products are always safe, always work, and are always green. If you would like more information about Shaklee products, please contact me, Terry Guinn, Shaklee Independent Distributor, through my website at www.ahealthieryoutoo.com or if you would like to checkout the products for yourself, go to my Shaklee page at www.ahealthieryoutoo.myshaklee.com
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Shakleebaby & Shakleekids |
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