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Lupus: A Mother's Journey to Understanding the Disease with Many Faces

July 23, 2013

Lupus is a devastating autoimmune disease that disproportionately affects women and people of color. Patients currently spend an average of four years and see three different physicians before this complex disease is correctly diagnosed. But with knowledge comes hope and, at an event in Washington, D.C. on May 16, 2013, the American College of Rheumatology's Lupus Initiative, supported by the U.S. Office of Minority Health, launched a free curriculum for health professionals and schools across disciplines to recognize the signs and symptoms of lupus to improve outcomes and reduce health disparities. Brenda Blackmon, a multi-Emmy winning New York journalist and co-anchor of WWOR's My9 10 o'clock news, moderated the launch event and shares her story of how her daughter, Kelly, was diagnosed with lupus. In 2008, Blackmon founded The Kelly Fund for Lupus, a non-profit organization to promote awareness and understanding of the disease, with emphasis on women of color.

Imagine sitting bedside in the Intensive Care Unit. A doctor walks over to you and says, "Your daughter is going to die. There's nothing more we can do. You need to give us permission to disconnect the respirator."

This scene is supposed to come from a movie. It could be a news story I read on the newscast any night of the week. But this was my life. The person in the bed connected to a respirator was MY daughter. And it was my turn to ask God to take my life instead of hers because I refuse to be in denial about this awful disease called lupus anymore. I now knew it could be life-threatening. And I was determined it was not going to take my child's life. After all, she just had a rash, some weight loss, a little fatigue, symptoms typical of college girls who work hard to achieve. She was going to law school. She was not going to succumb to this disease.

***

Click here to read the full article.

Source: National Partnership for Action - MinorityHealth.hhs.gov


Lupus: A Mother's Journey to Understanding the Disease with Many Faces

July 23, 2013

Lupus is a devastating autoimmune disease that disproportionately affects women and people of color. Patients currently spend an average of four years and see three different physicians before this complex disease is correctly diagnosed. But with knowledge comes hope and, at an event in Washington, D.C. on May 16, 2013, the American College of Rheumatology's Lupus Initiative, supported by the U.S. Office of Minority Health, launched a free curriculum for health professionals and schools across disciplines to recognize the signs and symptoms of lupus to improve outcomes and reduce health disparities. Brenda Blackmon, a multi-Emmy winning New York journalist and co-anchor of WWOR's My9 10 o'clock news, moderated the launch event and shares her story of how her daughter, Kelly, was diagnosed with lupus. In 2008, Blackmon founded The Kelly Fund for Lupus, a non-profit organization to promote awareness and understanding of the disease, with emphasis on women of color.

Imagine sitting bedside in the Intensive Care Unit. A doctor walks over to you and says, "Your daughter is going to die. There's nothing more we can do. You need to give us permission to disconnect the respirator."

This scene is supposed to come from a movie. It could be a news story I read on the newscast any night of the week. But this was my life. The person in the bed connected to a respirator was MY daughter. And it was my turn to ask God to take my life instead of hers because I refuse to be in denial about this awful disease called lupus anymore. I now knew it could be life-threatening. And I was determined it was not going to take my child's life. After all, she just had a rash, some weight loss, a little fatigue, symptoms typical of college girls who work hard to achieve. She was going to law school. She was not going to succumb to this disease.

***

Click here to read the full article.

Source: National Partnership for Action - MinorityHealth.hhs.gov



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