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Raising Awareness: Lupus

Posted May 07 2010 7:33am
By, Vanessa
OurHealth Staff Writer

The strength and courage of African–American women is legendary. The burdens we bear. The obstacles we face and overcome. Our ability to make a way, to provide for our families, to comfort and support, are all on record as being the traits that set us apart. We are phenomenal women.

However, there are times when I wonder if the idea of the “strong black woman” is both a gift and a curse. There are times when I think we need to reach out to each other, to ask for help, to say that we are going through some things, and yet many of us sit silently. We suffer our aches and pains, sadness or disappointments and illnesses in silence.

When you look at the statistics related to black women and diseases such as cancer or heart disease, you often see that we wait too long to speak up or seek treatment. That we suspect that something is wrong, but we’re so busy taking care of others, that we don’t take care of ourselves with the urgency that is needed. The medical community often says that there needs to be more “awareness” in the black community about our health and wellness.

That’s why when I was browsing on Facebook on the page of a high school friend and saw a video for “Team Koopie and Lupus”, I was intrigued. What is Lupus? I wasn’t really sure, but I was drawn to the video and it’s content and struck by the power her story. Here was a black woman, telling her story. She wasn’t suffering silently. She was spreading the word and rallying her friends and family and raising awareness about a disease that affects 1 in 250 black women.

I reached out to the subject of the video, Kawanna. I told her about OurHealth and asked her if she would be interested in sharing some of her story with us. She graciously agreed and I am so glad she did. Her story is powerful and inspiring.

I hope we can educate some of our readers about Lupus and also encourage you to speak up or seek help when your body starts to tell you that something is not right.

What is Lupus? From the Mayo Clinic: "Lupus is a chronic inflammatory disease that occurs when your body's immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems, including your joints, skin, kidneys, blood cells, heart and lungs."

Lupus occurs more frequently in women, though it isn't clear why. Four types of lupus exist — systemic lupus erythematosus, discoid lupus erythematosus, drug-induced lupus erythematosus and neonatal lupus. Of these, systemic lupus erythematosus is the most common and serious form of lupus.

The outlook for people with lupus was once grim, but diagnosis and treatment of lupus has improved considerably. With treatment, most people with lupus can lead active lives.

Common Symptoms of Lupus
* red rash or color change on the face, often in the shape of a butterfly across the nose and cheeks
* painful or swollen joints
* unexplained fever
* chest pain with deep breathing
* swollen glands
* extreme fatigue (feeling tired all the time)
* unusual hair loss (mainly on the scalp)
* pale or purple fingers or toes (from cold or stress)
* sensitivity to the sun
* low blood count
* depression, trouble thinking, and/or memory problems
* mouth sores
* unexplained seizures (convulsions)
* seeing things (hallucinations)
* repeated miscarriages
* unexplained kidney problems

Did you know: African American women are three times as likely as white women to get lupus. African American women tend to develop lupus at a younger age and have more severe symptoms than white women.

An interview with Kawanna P.

Can you tell us a little about yourself ?

I currently live in Federal Way Washington. I turned 33 yrs old on January 7th. I'm an admin assistant at an awesome company called World Vision.

How did you discover that you had Lupus?

Unfortunately it runs in my family. So I’ve always had this feeling in the back of my mind, due to the many many frustrating years of battling with extreme fatigue, and joint & muscle discomfort. I was finally diagnosed in 2006 at the age of 29 when I literally woke up one morning and could not move!!! I was rushed to the hospital and after a few tests they discovered it was in fact lupus.

(picture left - turning 30, freshly diagnosed with Lupus, puffy face from the steroids)

What was your initial reaction to the diagnosis?

I had many mixed emotions. It was a relief that I was finally diagnosed and could start the proper treatment. But I was also scared to death and even a little angry with God for allowing this to happen.

The first nine months was the most horrible period of my life!! I endured countless number of doctor’s visits, numerous changes in medications, painful blood tests (sometimes on a weekly basis). And as if several months of this weren't enough, I was then told by my doctor that "we need to take more drastic measures to hit this thing head on". So two weeks after my 30th birthday the "drastic measure" was chemotherapy. Which in some Lupus cases its used as a method to decrease abnormal activity in the immune system

Lupus is chronic and currently there is not a cure, what do you do to manage the disease?

Lots and lots of prayer!! I also have daily scriptures of healing that I read. It’s sort of my way of healing myself mentally. I’ve recently changed up my diet a bit. Most people would think 135lbs is not a lot but for me it is. I’ve always been “a buck o nothing” up until all the steroids and other medication. So more fruits, veggies, chicken, and fish (less fried foods). I also drink a lot of water, no alcohol or soda. And after all of that I try to be good to myself…..massages or any kind of self pampering (I’ll admit I need to do more of this)

You’re a mother, how does having Lupus play a role in motherhood?

It does put a slight damper on my physical abilities at times. I’ve been blessed to have a huge family and circle of friends who doesn’t hesitate to lend a hand if I need them. The other blessing is she very smart to be only 6. I've explained to her about the illness. She even goes to some of my speaking engagements with me or helps me hand out info at our lupus table. Most of the time when I say "mommy is to tired today, mommy cant walk very well today, or mommy's not feeling to well today". She'll say something like "Oh the lupus again huh?". So she makes being a Mom so easy and rewarding… or two trips to the library per week and she’s content.

What is Team Koopie, can you tell us a little about how Team Koopie came to be?

TEAM KOOPIE is a group of my family & friends who came together after I was diagnosed 2006. This group is dedicated to spreading awareness about Lupus and assisting me with finding a cure. We originally formed with 50 – 60 members for a local Walk With Us To Cure Lupus walk sponsored by the Alliance For Lupus Research. Since that time we have grown to over 150 members. We now make the ALR Lupus Walk an annual event for Team Koopie and we strongly support their mission of 100% of all their proceeds go to lupus research. Team Koopie is also present at local health seminars, church conferences, community fairs and have even birthed our own annual events such as “An Evening For A Cure”, “Singing For A Cure”, “Laughing For A Cure” and most recent “Striking Out Lupus”.

(Team Koopie 2008)

You’re clearly a very passionate and involved advocate for this disease and finding a cure, did you ever consider not stepping forward or keeping your diagnosis to yourself?

I have always been a very private person, so originally I only shared my diagnosis with family, close friends and a few coworkers. One of my coworkers approached me (Jeanette James) about a local Lupus Walk that was taking place in less than two months. I gave her every excuse in the book as to why I couldn't do it. Again the "private person" in me didn't want to be exposed. Soon after that, God really began to deal with me and my "private self" which was really my "prideful self". Just as plain as day God said, "This is bigger than you, I need YOU to pray for those who are not able to get a prayer through, I need YOU to be the voice for those who are afraid of speaking out, I need YOU to lay hands on those who may not know ME as a healer". I'm no fool, so it's safe to say I got busy soon after that!! I told God as long as He gave me movement in my body and gave me the words to say I would be a vessel.

How do you stay positive and motivated on the days when you may not be feeling so well?

Once again if it wasn’t for my strong faith and spiritual foundation, I’m not sure where I would be!! One of my favorite scriptures is Romans 8:25 “But if we HOPE for what we DO NOT see, we eagerly wait for it with perseverance”. So on my bad days when I don’t feel so good…..I SEE myself healthy, I SEE myself free of pain, I SEE myself totally healed from lupus.

(A portion of Team Koopie at the Singing For A Cure concert)

Outside of being involved with Team Koopie and finding a cure for Lupus, what do you like to unwind or have fun?

I have a circle of 20 year friendships with a group of ladies that I grew up with in church. We do everything together from BBQ’s at each others homes, movie nights, clothes swapping parties….you name it we do it!! I also enjoy reading, shopping and spending time with my family. I have a very large family so someone is always having a birthday, a baby shower or Sunday dinner gathering. Its those kind of priceless moments of laughter that I enjoy with my family. As I get older I’m finding that “me” time alone isn’t so bad either.

What would you say to other African-American women who may be suffering from Lupus?

Lupus affects people of all ages, including children, but it most often strikes people when they are between the ages of 15 and 45. Nine out of ten people with lupus are women. It’s three times more common among African American women than among Caucasian women, and is also more common in women of Hispanic, Asian, and Native American descent. So to all women I say…….there’s always someone waiting to hear your story. Don’t be afraid to stand up and say I have this illness too, let’s fight it together!!

Thank you Kawanna for sharing your story!

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