NTM Environmental Scientist Brionna Marks traveled to Washington, D.C. to speak at the 2023 National Lupus Advocacy Summit held April 23-25, 2023. She is a leader in patient advocacy and is a leader in her local support organization.
May is Lupus Awareness Month. Lupus is a chronic inflammatory autoimmune disease that unfortunately is incurable. Your cells attack healthy cells instead of infectious cells; essentially your body attacks itself. 90% of people suffering from Lupus are women. It can manifest in many different ways, primarily involving extreme joint pain, severe fatigue, organ involvement such as kidney disease, lung, heart, GI issues, and skin rashes to name a few. Although Lupus impacts your physical health, it also impacts your mental, social, and financial health as well. Impacting your relationships, your career, and financially stability. It is known as an invisible disease, because many people look physically “normal” on the outside, but are struggling immensely on the inside.
Brionna has been struggling with Lupus for five years and every day is a battle. She was honored to be asked by the Lupus Foundation of America (LFA) to join the Lupus Research Action Network (LRAN) and discuss with our representatives not only about raising awareness for Lupus but the importance of clinical trials. Currently there are only three drugs approved by the FDA for the treatment of Lupus. These drugs have various side effects and are very expensive.
Brionna, along with Lupus warriors and care givers had the pleasure of going to Washington D.C. to talk to members of Congress and Senate about Lupus awareness, research, funding–making Lupus visible. They presented three bills that they would like our Congress and Senate members to co-sponsor that would help improve the lives of those suffering with Lupus physically and financially. It was an inspirational weekend filled with hope.
The advocates got to share their stories with Congress and the Senate in the hopes that they will hear them and choose to make a difference.
If you would like to learn more about Lupus visit the LFA website: Help Us Solve The Cruel Mystery | Lupus Foundation of America
May 10 is World Lupus Day, put on purple and make lupus visible!
#lupusawarenessmonth #lupus #worldlupusday #lupustristate