MAJ Toni Grimes, Retired U.S. Army

It was March 2007 and MAJ Toni Grimes was 16 years into her Army career. She was attending a military school in preparation for an upcoming assignment with a follow-on deployment in Iraq when she was diagnosed with lupus. While preparing for her deployment, Toni had 1.5 liters of fluid removed from her lung, which returned in 12 hours, resulting in a collapsed lung.

On the same day that her unit was deployed to Iraq, Toni had surgery to repair her lung, which had been damaged by lupus complications. And later in May 2008, while deployed in Afghanistan, she was medevacked to Germany and treated for early stages of kidney failure. Despite the complications associated with lupus, Toni was able to remain on active duty with a non-deployment status. Unfortunately, that changed when she was diagnosed with neuropsychiatric lupus, psychosis, and post-traumatic stress disorder (PTSD). As a result of the neuropsychiatric lupus, Toni was hospitalized for 6 months; she had to relearn how to walk, talk, and write. After more than 19 years of military service she was medically retired in February 2011. The Army gave Toni purpose and a mission but, as she says, “lupus took that away from me.” 

After spending her first year of medical retirement focusing on her health and learning how to live with lupus, Toni began to share her story with others, which led to advocating for those who no longer had the strength or resources to do so. As Toni says, “Advocating and spreading awareness has become my life’s purpose.” To that end, Toni has traveled to Capitol Hill several times since 2010, representing lupus patients from Arizona. She has also served as the Chair and committee member for the annual Walk to End Lupus Now. Toni continues to be a Support Group Facilitator and spokesperson for the Arizona Lupus Warriors Support Group. With the same determination and strength that she learned in the Army, Toni has pushed on as an advocate; she joined the Lupus Foundation of America Education Committee in 2014, became a Lupus Foundation of America Ambassador in April 2019, and took on the role of Constituent Engagement Liaison for the lupus community in the state of Arizona in May 2019. 

Toni’s unwavering passion for lupus advocacy led her to join the Fiscal Year 2018 Lupus Research Program peer review panel as a consumer reviewer. She is grateful for the opportunity to have served as a consumer reviewer and have been the “voice” of the lupus community. She believes that consumer peer reviewer involvement allows lupus patients the opportunity to share patient concerns and be an integral part of the research process. During the peer review process, she was impressed with the scientific communities’ commitment to bettering the lives of lupus patients through funding high-quality research. Toni is looking forward to the advancements in lupus research, because she knows scientists and researchers “are creating and developing amazing studies to help lessen [the severity of symptoms] and eradicate lupus [altogether].”