Blog: National Partnership for Action
Lupus: A Mother's Journey to Understanding the Disease with Many Faces
Posted on 7/23/2013 by Brenda Blackmon
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:
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.
Posted in: Health Disparities African American Lupus Minority Health Women's Health | Comments (9) | Add a Comment | Comment Policy | Permalink
This is an amazing story and it is inspirational. I pray along with you that they find a cure for Lupus soon. Every day is different for people with Lupus and I think people feel like if you can't see a illness it doesn't exist. Lupus is proof. Thanks for sharing your story!
Well done to two remarkable ladies in striving for more awareness & promotion of this devastating desease! Lupus crash landed into my life 2 years ago and it has been a battle ever since but Kelly is a perfect example of a Lupus sufferer "a pillar of strength and spirit" ! Every day can be a struggle but the fight is on and we will win! Sending gratitude and thanks for your continued efforts - Mum's are truely remarkable creatures X
Kelly you are both remarkable and brave continued success with The Kelly Fund for Lupus:)
Good luck to you both. God Bless. My Mother passed away in 1987 from complications with Lupus. She was 50 when they finally diagnosed her and 58 when she lost the battle. So glad your story has made a miraculous turn. Wish you all the best.
I've had lupus since 1999. Because of the medication I had to have a full left hip replacement Jan.31,2012.I have been in a coma(18 days),it has at times effected my eyes, heart,lungs,kidney's and of course every joint. I am a musician(saxophone) who has had to put a lot of opportunity on the back burner, after being exposed to high profile musical situations.I'm happy to say that sometime between August 31st and September 1st I will finally be moving back to NYC. I would hope someone could guide me to some good doctor's,while I pursue good living conditions and a good quality of life!!! I also look at my lupus as my teacher which has allowed me to teach some of my past doctors'!!! Thanks for being...
Thank you all for your efforts. It's a shame that with so very many people with Lupus that there isn't enough awareness. Yes you say cancer and people know or at least aware of it. In my many hospital stays, there have been far to many healthcare providers that still do not know what Benlysta is. Yes! I did say in the hospital and healthcare providers. Doc's and nurses!!!! Then they aren't really sure what course of action to take. But thankfully, I now know the drill and I take charge of my meds and ask tons of questions. I spread awareness as much as possible. I thank you for your efforts and pray the drug companies start hustling. There's tons of us that need a cure!!!
This story is very close to my own heart. My wife Genie was complaining for many 9 years about some weird feeling in her head. She was told it was everything from a sinus problem to depression to who knows what. Then in May of 2005 she couldn't urinate, so I took her to see the Doctor. They put a catheter in her and told her to come back in a couple of days for more testing. By the time she was suppose to go back, she didn't have the strength to stand or walk. I had to carry her to our car, and when we got to the Doctor's office, got a wheelchair to get her inside. The Doctor took 1 look at her and said he's putting her in the hospital. She went through a spinal tap and other testing. It took 3 days before they concluded t was Lupus. Like Kelly it to was in her brain. The Doctors in the hospital gave her a couple of days and said then she would be dead. A close friend of mine came to the hospital where we laid hands on her and prayed for a complete healing. Her blood pressure at that point was low to the point of death. After my friend left I read Bible verses to my wife, though she couldn't hear (drugged out), I read how JESUS healed many. As I read her blood pressure started rising up. When she finally come to it was June 19th. She didn't remember anything dating back to when she arrived at the hospital on May 23rd. Almost 4 weeks. She went through rehab to learn how to walk again. Our Doctor set us up with another Doctor who specialized in Lupus treatment. He told us he had 2 other patients that had Lupus in their brain and neither 1 lasted 2 years before their death's. That was August 2005. He has put her on prednisone to keep her white blood cell count up. ! thing Lupus does, is it makes your immune system stupid. It kills the good white blood cells thinking they are a virus. I read a book by a Dr. Strand out of Colorado, and he believes that Lupus is a virus and recommended certain vitamins and nutrients. She has been taking Vitamins C, B complex and E, along with grape seed extract, fish oil, L-glutathione, and COQ-10. She still has a balance problem and her memory fails her once in a while, but her Doctor is amazed how well she's doing. He also teaches at Touro University in Henderson Nevada (we live in Las Vegas) and he brings a student into his office now and then and they sit in on our visits so he can explain things to them about her situation. So now it's been over 8 years and we know that it's been the prayers of family and friends more than anything that have kept her alive. As far as the vitamins and nutrients she still takes them. On a side note, when we started taking them, her Doctor said he didn't believe in them, but when he noticed that the discoloration of her nails was clearing up, and her hair wasn't falling out (2 things Lupus causes) He started to realize that they were worth taking. He now asks if she's still taking them. Also his own Doctor for his medical treatment now has him on COQ-10. He asked us how we get our Vitamins. We thank our GOD and LORD and Savior JESUS CHRIST everyday for the healing he has given her. Though she's not 100% and still has the weird feelings in her head, she's doing a lot better (she's alive) then the other 2 patients her Doctor told us about. GOD can do things that no Doctor can, and putting our trust in him has been her best medical treatment.
PRAISE GOD !!!! Purpose To Be the Salt And Light God Called US To Be . I'm A 39 yr In COUNTING LUPUS SURVIVOR . ( SLE ) BLESSINGS TO YOU AND MOM AS WE EMBRACE AND SHARE OUR PURPOSE !!!! GOD IS PLEASED !!!! LOVE YOU EACH MUCH !!!! Brenda Smith " I HAVE LUPUS BUT LUPUS DOESN'T HAVE ME "
I was diagnosed with lupus at the age o 35 after having a stroke. I wish u had learned about this sooner. I am now 43 and feel i still have a lot to learn. How si I get ibvolved with groups like yours.
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The NPA works to achieve health equity -- the highest level of health for all people. This blog is a venue for professionals from all fields and sectors to share their thoughts on pressing issues, news and events pertaining to health equity. Follow and participate in this candid discussion.
About the Author
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.
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