A Sister’s Story: New Hope in Her Twin’s Cruel Struggle With Lupus

May 31, 2017 | News, Lupus, Lupus 2020, Products

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Lupus Awareness Biotechnology Charlottesville Virginia Twins AMPEL Biosolutions Innovation University

There is nothing better in the world than having a twin sister. We get to share clothes and shoes, and have a lifelong best friend.

More importantly, there’s a certain “synergy,” a sense, an intuition that we share. We know how to encourage each other without saying a word, celebrate the other’s successes, and divide sadness. It is an unbreakable bond.

So you can only imagine the sorrow and hurt I felt when my twin sister, Deidre, was diagnosed with Lupus over 20 years ago.

Lupus, often called a “Cruel Mystery,” is an autoimmune disease that attacks the organs, joints, and skin. There is no cure. While anyone may be diagnosed with Lupus, it affects primarily women of childbearing age. Women of color are two to three times more likely to have the disease. An estimated 1.5 million Americans are battling Lupus, with 16,000 new diagnoses each year. There are many others who may suffer but their condition remains undiagnosed.

When Deidre was first diagnosed in 1997 at age 26, she experienced debilitating fatigue, headaches, joint pains, and other symptoms which sidelined her active lifestyle. She was told she may not be able to have a family if her Lupus wasn’t under control. She sought treatment, support and back then there were limited options to help her and other patients. After all, 2011 marked the first new Lupus drug approval in more than 50 years.

At first, Deidre was uncomfortable discussing her diagnosis. Now, sharing her inspiring story with others and helping patients know that they are not alone strengthens her. Known as “The GEE Twins for Lupus” we spread Lupus awareness creatively with our handcrafted butterfly awareness pins, serve as Board members for Lupus Foundation of Northern CA and advocate in Washington, DC.

There’s also new reason for hope because of breakthrough technologies that can revolutionize research in the fight against Lupus.

A group of researchers at a small company called AMPEL Biosolutions in Charlottesville recently developed technology that gives researchers unprecedented ability to monitor patients almost around the clock and collect data virtually in real time. Much like a Fitbit, Lupus patients can wear a device and use an app to monitor and record their symptoms and activity level. Because patients often feel good one day and lousy the next, one-size-fits-all treatments do not work. This clinical trial is under way and shows great promise.

Founded at the University of Virginia Research Park, AMPEL is also embracing big data to find new ways to diagnose patients, identify symptoms more quickly to prevent organ damage, and recommend drugs that are already in the market to be repositioned to effectively treat Lupus symptoms.

Coupled with mindfulness programs, support groups, and aggressive legislative advocacy, there is much hope for those bravely battling Lupus. Advancements in science and technology, plus increased community awareness all point to a brighter future for those with Lupus.

Because May is Lupus Awareness Month, we have been doing all we can to share our story and tell everyone we can about the good news of new research and better treatments. We are thankful for the many scientists, innovators, doctors, and friends who are coming together to Solve this Cruel Mystery.

The GEE Twins for Lupus are Kirsten (Gee) Maeda, co-founder and former co-leader of a Lupus Support Group in California, and her twin sister, Deidre (Gee) Baptista, who is valiantly battling Lupus. Together they work with the Lupus Foundation of Northern CA serving as Board members and creatively advocate and serve as powerful advocates for fighting this Cruel Mystery.

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