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Lupus With Flair

Always remember you are braver than you believe, stronger than you seem, smarter than you think and twice as beautiful as you’ve ever imagined. – Dr. Seuss.

This quote by Dr. Seuss has a powerful impact on me, much like the HealtheVoices community. The team and community involved with HealtheVoices helps me believe that I have a brave voice worthy of sharing my ideas. In fact, the HealtheVoices Impact Fund is an incredible program that supports patient leaders and helps them finance their dream projects and to create their own ideas or campaigns. In June, I will be sharing how to “engage your community on Twitter” during the Super HealtheVoices Live event, but before I do, I will be implementing and producing my HealtheVoices Impact Fund project. The idea is a reality, and this May, I am going to be sharing my concept of “living with flair.”

Shortly after my ex-husband left, my older brother died of complications during the COVID-19 pandemic, I was feeling lost and confused, yet I submitted my idea to share and shine a spotlight on the lupus community during May, Lupus Awareness Month, to the HealtheVoices Impact Fund. Last Fall, shortly before the Born This Way Foundation released their Impact Report, I found out that I was one of the Impact Fund grant recipients. I would be tasked with directing and creating the #LupusWithFlair hashtag on Twitter and Instagram.

Autoimmune diseases are characterized by periods of heightened disease activity “flare” and periods of time when the condition and symptoms and controlled and managed. As a woman who lives with lupus, I am constantly struggling to find the “flair” of life with chronic autoimmune diseases, while managing to avoid (or fight) a “flare,” I tend to accentuate the positive and when I can, like to shift things around, as lupus tends to do to the lives of lupus patients/warriors.

In May of 2021, on Twitter and Instagram, I will be highlighting lupus warriors who have made a positive impact on me from how they share their journey with lupus in the world today. From celebrating the publication of Marisa “Lupus Chick” Zeppieri’s memoir “Chronically Fabulous” published by Broadleaf Books. [Note: Marisa’s story will be familiar to those who have read the book “Channel Kindness” Marisa is featured in Chapter 35 Lupus Chick by Maria Mongiardo] to helping a fellow lupus warrior share her story and raise awareness as she searches for a kidney donor. There are as many patient stories as there are lupus patients and through the “eyes of a warrior,” I hope to make an impact in lupus awareness and community support by using the social media platforms to reach the community where they are.

On Instagram, I will be sharing interviews Live, posting bright colorful graphics in Stories and Posts, while on Twitter I will be tweeting and using the new audio function, and Friday Nights in May, I am going to share a Live interactive discussion using SPACE to enhance and increase the impact of #LupusWithFlair (Twitter Friday Nights, 8:15pm Eastern/5:15pm Pacific) In addition to patient interviews and stories, I hope to celebrate the unique nature of lupus, by encouraging the community of patients, friends, family and healthcare providers to engage and harness their “Lupus Style” by wearing clothes and accessories that show off their flair by sharing it online.

In lieu of care packages, I am curating and assembling “Flair Packages” for members of the #LupusWithFlair community. I hope that each packet of information, resources, and purple items will empower the warriors to share their flair and make their own impact with the items I send. I believe that each person will demonstrate the unique nature of how the disease lupus manifests itself.

Will you support me and share? Join the fun. Whether you are on Twitter or Instagram, please follow and share the hashtag #LupusWithFlair – interested in taking more action, great. On May 10th, don a cap, beret, or Stetson but “leave your hat on” for World Lupus Day. For more fun and interactivity reach out to me for a complete and updated schedule of ways to share your flair this Spring.

(Video courtesy of Jon Burgerman)

Amanda Greene is a lupus warrior, kindness punk and was the first person in the Lupus Community to design and wear a bright purple cape with sequins to share her passion and flair. She looks forward to making an impact and hopes that this post for Channel Kindness helps. Amanda is currently completing her training to become a Health and Life Coach, where she can fulfill her passion of helping more patients on their journey to live “with flair.” Connect and find Amanda as @LAlupusLady on Twitter and @msamandagreene on Instagram.

Amanda Greene

Amanda Greene is actively involved in healthcare advocacy, she lives with systemic lupus, fibromyalgia and other chronic autoimmune diseases. She writes for “The Mighty” and contributes her perspective to health websites. Recently announced as a 2020 HealtheVoices Impact Fund recipient. In 2020, Amanda shared “How Twitter can connect communities.” at the Super HealtheVoices conference in April. She shared her perspective on virtual reality for people with chronic pain at the Virtual Medicine online event this Fall. In 2019, the Lupus Research Alliance honored Amanda as a “Lupus Luminary.” Connect with Amanda on Twitter at @LAlupusLady or on Instagram as @msamandagreene.

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