Posted on July 16th, 2012 by Admin
Editor's Note: Melissa H. is a patient/caregiver who submitted the following essay as part of the Mayo Clinic Center for Social Media Patient, Caregiver Scholarship Contest. To vote, simply use the Facebook "Like" or Twitter "Tweet" buttons at the bottom of each post to share or leave a positive comment. The top vote-getters will be finalists.
I never expected to be a caregiver. I never expected to be an advocate. I never expected to be a social media strategist. But my son Case gave me those titles and so much more. Case is five years old and suffers from a rare disease called Hunter Syndrome, believed to affect only about 2,000 patients in the world. His diagnosis floored us for a time; then we proceeded to pull ourselves up by our bootstraps and reorder our lives. I was a lawyer and strategic consultant at the time. My primary job then became caregiver. He has 11 doctors, 3 therapists, a weekly infusion, and clinical trial surgeries and procedures.
My secondary job then became advocate. I wrangle with insurers, schools, pharma companies, hospitals, doctors, and social services. My tertiary job then became strategist, but not in any way that I had done before. I would strategize about how to cure my son, raise awareness, raise funds, help families, and advocate for needs. Social media quickly became an integral part of those roles.
Each pivotal event in our rare disease journey so far has involved a deeper need for the connection, exposure, and coordination that social media offers. First, after my son Case was born in 2007, I joined Facebook and LinkedIn, but it was on a personal basis. Then, when Case was diagnosed with Hunter Syndrome in 2009, I connected with other parents on an online forum, then with family and friends on CaringBridge. I soon fired up our awareness and fundraising campaign with a YouTube channel (HoganHouse), a Facebook group, and a website. But when Case began a clinical trial in 2010, more was required. This clinical trial was groundbreaking in our MPS community. Social media would provide the means to share the experience, seek input, and raise more awareness. So I started a website and blog of our experience with the clinical trial and other issues relevant to our MPS community (http://www.savingcase.com), as well as a personal blog of our story (http://www.myunplannedson.com). SavingCase is now being read in over 100 countries around the world. Twitter soon followed (@SavingCase), along with Pinterest (SavingCase), a Facebook page (http://www.facebook.com/savingcase), a private forum for the clinical trial participants, and a Reddit page (HunterSyndrome).
Each of these participations began slowly at first and without any well thought out "plan" as to my agenda or the ultimate goals. The initial start just came from the understanding that it would likely help in some way, shape, or form. That is where the people are… or would be. That is who needs to be reached… for awareness, for understanding, for fundraising, for our children. And now I use these avenues to raise awareness of rare diseases (especially Hunter Syndrome), to collaborate with other parents, rare disease groups, and e‐patient advocates in the U.S. and internationally, to share learnings about treatments, therapies, and special education, to share progress in the clinical trial in which my son participates, and to put a beautiful face on a terrible disease.
I don't pretend to be an expert on social media. I still have a lot to learn. And it is at the Social Media Summit where I hope to learn a framework to "frame" all of my "work" so far and going forward ‐ how to collect these efforts into a cohesive social media strategy, how to reach the specific audiences I seek, how to implement social media best practices, how to make a difference in the lives of families facing rare disease.
Although I am not yet an expert on social media, I am an expert on my child and on Hunter Syndrome. I am an expert on what is important to many rare disease and special needs parents who participate on a regular basis with multiple providers in the health care system. I am an expert on active patient participation in the health care system, both as a caregiver to a child with a chronic disease and as a participant in a clinical trial. It is through social media that I have learned and I have taught. That is what I hope to contribute to the event if given the opportunity.
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