The GEE Twins: Our Lupus Story
"The GEE Twins for Lupus"
Deidre (Gee) Baptista & Kirsten (Gee) Baptista, Washington, DC
Kirsten (Gee) Maeda; Bridget Hood; Dr. Debbie Jessup; Peggy Dowd, LRI Executive Director;
Kirsten (Gee) Maeda
Proclamation declaring May
as Lupus Awareness Month
City of Irvine, CA 4-24-13
Deidre (Gee) Baptista
Resolution declaring May
as Lupus Awareness Month
City of Rocklin, CA 4-24-13
The GEE Twins for Lupus — Deidre (Gee) Baptista and Kirsten (Gee) Maeda — are thrilled to have been part of the Lupus Research Institute (LRI) Coalition in March 2013 in Washington DC.
We enjoyed learning all about the latest research, programs, and movement efforts being put forth by so many dedicated people. The interaction with the Congressional offices was exhilarating, educational, and empowering. We left DC with a sense of energy and purpose.
The advice given by one of the Congressional office was urging us to continue our work on a grassroots level in our own communities. We are proud to have participated in this year's Lupus Advocacy Day 2013 as LRI Coalition members. We are truly passionate about spreading Lupus awareness and after spending time in DC, we now realize how we can shine some light on the radical disparity, women of color (African Americans, Asians and Hispanics) are three times more likely to develop Lupus. We also know our "twin synergy" helps to drive and encourage each other to continue to give hope towards a cure. We are excited about the upcoming launch of the Lupus Initiative and cannot wait to spread the awareness to our medical communities, with health care providers, medical students, nurses and the public. So, we quickly decided to get our cities involved.
We were successful in getting the City of Rocklin, CA and City of Irvine, CA to approve a resolution and a proclamation recognizing May as Lupus Awareness month. It just so happen, we stood before the City Council members, the mayors and members of our respective communities at about the same time on the same day to accept the resolution and proclamation declaring May as Lupus Awareness Month.
Together we know a great deal about Lupus. Deidre has had lupus for over 18 years, and while Kirsten does not have Lupus, her last mother in law lived with Lupus for many years. Kirsten has been co-leading The Irvine Lupus Support Group in Irvine, CA for over three years and has been a speaker at the UC Irvine Anteaters's Against Autoimmunity fundraising events. We both have young elementary age children (five in total), and a young sister with three young children of her own, so are concerned about the genetic component that may play are part in ourchildren developing lupus.
While in DC, we asked one of the rheumatologist speakers which of our children might be at a greater risk of developing lupus. The doctor thought it was a good question, even though he did not know his answer was for us to check back in ten years. While much progress has been made, there are still many mysteries to unlock in this complex and often life-threatening illness.
As a lupus patient, being part of the lobbying efforts was very exciting and at times extremely emotional, hopeful and meaningful. Not knowing what that journey would be like to come to DC and to be advocating at this level of involvement is wonderful. Deidre came from a space where she lost her job, relationship and was robbed of many valuable years during her twenties and early thirties.
It is with great gratitude that "The GEE Twins for Lupus" as we are known, are able to be part of such an important cause and our heart aches for those battling the disease on a daily basis.
We are happy to be a part of the Coalition and proud to have been able to make a difference!