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.
That was June 2007. It doesn't seem so long ago. I still anchor the news in New York. My daughter Kelly is back to what seems like a normal life. The doctors call her, "A miracle". She cannot run or wear very high heel shoes, but considering she couldn't walk at all for nearly two years, she's doing quite well. She couldn't speak at all and now she speaks before audiences about a disease that attacked her brain and nearly took her life. She doesn't remember the 52 days in ICU or much of the six months in rehabilitation. She does remember the wheelchair and walker and varied colored canes.
Lupus took more than a year of her young life. It's not the same for everyone. I've learned that through educating myself and stopping the denial. Now I am determined to educate others everywhere, especially in minority communities where it is whispered about or not discussed at all. Lupus affects an individual but it also affects families and friends too. And I wasn't the only one who didn't know a lot about lupus. Neither did many responsible for Kelly's care. Talk of harvesting her organs, doctors running out of options, and finally the realization and review of her case with this conclusion: Every lupus patient is unique in diagnosis and treatment. And, all patients, regardless of their disease, race, ethnicity, or social status should be able to get access to the right information they need for their care and treatment, which is why initiatives such as this lupus curriculum and The National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care are so important.
I founded The Kelly Fund for Lupus, Inc., a 501c (3) organization that supports, serves and educates people living with lupus. And Kelly found a new purpose for her life. She first spoke about it to a group of young people at one of The Kelly Fund events. Here's an excerpt:
"I've learned to look at my lupus diagnosis as my teacher, and I know that this is a never-ending class.
My teacher shows up whether I want her to or not. The purpose of life is simply to live a life of purpose. Lupus education is my purpose. Lesson 1: When I'm trying to achieve something there are no limits, only expectations. Lesson 2: When you expect to do more, you will. Lesson 3: There will always be naysayers, defy the odds, surprise them. Lesson 4: Your true purpose prevails over any problem so remember you are one step away from using your gift on a higher platform."
Kelly took over as President of The Kelly Fund for Lupus last fall. She completed an Executive Philanthropy non-profit leadership training program.
Kelly and I both have a new purpose for our lives -finding a cure for lupus, no more denial.
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Brenda Blackmon is a journalist and co-anchor of WWOR's My9 10 o'clock. 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. She is a graduate of Fairleigh Dickinson University and holds a master's degree in public administration.