By Amanda Greene

Amanda Greene is finding the joys of Lupus. She was diagnosed with Lupus and APS at 15 years old. As "LA Lupus Lady" she is an online advocate for Lupus Research and Wellness. Amanda's flair for connecting using Social Media and passion for sharing made her transition to brand ambassador a natural one. Find Amanda online at www.lalupuslady.com or tweeting (too much!) @LAlupusLady.

Everyone wants the support of their family; but when you live with Lupus, a chronic autoimmune disease, you need it. I am a woman who lives with Lupus. As the Alliance for Lupus Research defines it, Lupus is an autoimmune disease, in which “the immune system turns against parts of the body it is designed to protect.” One of the things that Lupus has shown me is the ability to appreciate simple joys. I am not a mom – Lupus and my body has deprived me of the joy of motherhood – but my husband has brought joy into my life by giving me a niece. I am a “Savvy Auntie with Lupus!”

Sharing is caring… I enjoy raising Lupus awareness as @LAlupusLady on Twitter; and off-line, I enjoy dressing as “LA Lupus Lady” to support the Alliance for Lupus Research. When I made plans to travel to the East Coast to be a part of the 2012 Alliance for Lupus “Walk with Us for Lupus Now” New Jersey event, it did not surprise me that my niece, Rachel, changed her plans and woke up early to join me and support my team, “Lupus Awareness is Fun,” at MetLife Stadium. Rachel is a warm, caring but typical 13- year-old (almost 14!). She not only joined my team and walked with me, but she also got educated about my chronic illness.

It is hard to describe how I felt when I saw my sister-in-law, Debbie, and my niece, Rachel, on the field… I smiled so big my cheeks hurt (not a symptom of Lupus, by the way, but a side effect of Rachel’s presence.) My heart filled with pride – even now, as I write this, my eyes are welling with tears. Rachel’s support means more to me than anyone else’s. My niece keeps me focused on why I am so passionate about raising Lupus awareness and supporting the Alliance for Lupus Research: the future depends on educating the next generation. Here is hoping that every Lupus patient has a Rachel in his or her corner.

Spending time with Rachel is always fun; but when I was with my niece at the Lupus Walk, what I felt was tremendous joy and love. Rachel’s support for me and my life with Lupus has continued beyond the Alliance for Lupus event. Though the words are simple when she sends me a text, asking, “How are you?” she is doing much more than that. Rachel is beginning to understand the impact that Lupus has had on my life, and my niece is encouraging me to stay strong and move forward on my journey with Lupus.

Photo: Courtesy of Amanda Greene
Published: June 11, 2012