Posted by Sarah Bramblette (@born2lbfat) · Tue, Jul 15 at 12:40am CDT
Sarah Bramblette - Patient/Caregiver Scholarship 2014
My name is Sarah Bramblette, I am 36-years-old and have primary Lipedema and secondary bilateral lower extremity Lymphedema. I was diagnosed with Lymphedema in 2001, and Lipedema in 2004. Lipedema was first recognized by doctors at the Mayo Clinic in 1940 and is a medical condition that causes the abnormal accumulation of adipose tissue in my hips, legs, and arms. I have an advanced stage of Lipedema which includes the onset of secondary Lymphedema.
My initial diagnosis was delayed by two years because doctors blamed my weight for the size of my legs. Often patients with my conditions go undiagnosed due to lack of awareness among medical professionals who mistake Lipedema for obesity. Many times patients self-diagnose themselves from information they find on the internet and social media then set out to find a physician who will confirm the diagnosis. Accessing proper treatment is then an entirely new and different challenge.
While the internet and social media are great resources for support among patients with the same condition, it is not the appropriate platform for actual medical advice. However, with a lack of knowledgeable physicians we as patients often find ourselves with no other alternative than sharing possible treatments among ourselves. And often find ourselves in the position of educating medical providers about our condition.
In addition to my personal experience I have also made healthcare my profession. I have a bachelor degree in Health Services Administration and am currently working towards a master degree in Health Law. I combine my personal and professional experience in my advocacy efforts. I understand the needs and concerns of the various stakeholders and believe this gives me a valuable perspective and allows me to better communicate as I can tailor my story and presentation of information to relate to many types of audiences.
My goal for attending Social Media week would be to learn the proper and legal way to share information and support without crossing the line into medical advice. I also want to learn how to present my message in an effective way to reach medical professionals and insurance policy makers. I want to further develop my social media skills so that I can continue my advocacy efforts to help fellow Lipedema and Lymphedema patients locate doctors and treatment in their area and to access insurance coverage for treatment and compression.
My advocacy and awareness efforts include authoring a blog where I share my experience living with Lymphedema and Lipedema. I am currently advocating for the passage of the Lymphedema Treatment Act and was selected to participate in the Lymph Science Advocacy Program during the National Lymphedema Network National Conference (September 2014).
I currently use social media to spread awareness about my conditions and to connect with other patients. I am participating in the HealthCentral Anti-Stigma campaign, will be hosting #hachat with WEGO. In addition to using social media I have shared my story for publication in Your Weight Matters Magazine (Spring 2013 and Spring 2014), Psychology Today (November 2013), and the Narrative Inquiry in Bioethics: A Journal of Qualitative Research symposium on obesity (Fall 2014).
Twitter: @Sarah Bramblette
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