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Lupus education Program
THE NATIONAL BLACK CHURCH INITIATIVE PLAN TO LAUNCH A COMPREHENSIVE LUPUS EDUCATION PROGRAM TO ADDRESS THE NEEDS OF BLACK WOMEN IN OUR CONGREGATIONS.

Do you have lupus? We need your help to improve lupus treatment for African Americans.

The National Black Church Initiative plan to launch a comprehensive lupus education program to address the needs of Black women in our congregations.

NBCI $5 Million Lupus Campaign - Donate to NBCI with PayPal

We need your help. Thanks!

What is Lupus?

Lupus is an autoimmune disease which means that the body begins to fight against itself and we don't know why. The immune system normally fights off invaders like viruses, bacteria, and germs. But when someone has lupus, their immune system can't tell the difference between these invaders and the body's healthy tissue, so it attacks the healthy tissue too.

Additional facts about lupus that you should know:

    16,000
    Number of new cases of lupus reported each year.
  • Lupus can affect any organ in the body, including the skin, heart, kidneys, and brain

  • There is no cure for lupus yet

  • Lupus is not contagious... you can't catch Lupus from someone else!

  • Scientists don't know what causes lupus, but they think it may be caused by a combination of genetics and environmental triggers (like sunlight)

  • People with lupus experience flare ups (when the disease gets temporarily worse and you have a lot of symptoms) and remissions (when the disease gets better and you feel better)

  • It is believed that 5 million people throughout the world have a form of lupus.

  • Lupus strikes mostly women of childbearing age. However, men, children, and teenagers develop lupus, too. Most people with lupus develop the disease between the ages of 15-44.

  • Women of color are two to three times more likely to develop lupus than Caucasians.

  • People of all races and ethnic groups can develop lupus.

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What are the common symptoms of lupus?

It is hard to know if you might have Lupus just based on symptoms. Many of the symptoms mentioned below are common to other diseases and everyday life. Common Symptoms

  • Rash or redness across the nose and cheeks ("butterfly rash")

  • Joint pain and swelling

  • Fatigue (feeling tired all the time and needing lots of rest)

  • Getting a rash or feeling sick after being in the sun

  • Unusual hair loss

  • Fingers or toes that turn lighter or purple from being cold or feeling stressed

Who gets lupus?

15-44
Most people who develop lupus are in this age range.
  • Lupus is three times more common in Black women than in White women. The reason for this is not known

  • As many as 1 in 250 African American women will develop lupus

  • 9 out of 10 people with lupus are women. However, men and children can also develop lupus

How is lupus diagnosed?

  • If you have any of the symptoms of lupus, you may want to talk to your doctor about lupus. It is better to be diagnosed sooner rather than later so your doctor can begin treating your symptoms. If lupus goes untreated for a long time, it can cause organ damage

  • There is no single test that will show if you have lupus, but one blood test doctors often use is the ANA or anti-nucleic acid test
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How is lupus treated?

  • There are four different types of lupus:
    • Cutaneous (discoid)lupus affects only the skin

    • Systemic lupus erythematosus (SLE) affects internal organs such as the heart and kidneys

    • Drug-induced lupus is caused by taking certain medications and should stop when you stop taking the medication

    • Neonatal lupus is a rare type that can occur in the fetus of a woman with lupus and may cause a heart defect

There are different types of lupus

  • People with systemic lupus (lupus that affects the joints and internal organs)are treated by a rheumatologist (a doctor that focuses on joints and autoimmune disease)

  • People with cutaneous lupus (lupus that appears on the skin) are treated by a dermatologist

  • People with lupus may need to see other kinds of doctors, too, depending on how the disease affects them. For example, if someone's kidneys are affected by their lupus, they should also see a nephrologist or kidney doctor

Living with Lupus

  • People with lupus can still work towards their goals and live a healthy, fulfilling life.
  • They can do this by having a healthy lifestyle in addition to working with their doctors to find the medications that work best for their disease

    "It has given me a different outlook on life, a reminder that life is precious."

    Toni Grimes, an African American military veteran on her work to raise lupus awareness

Lifestyle Tips for People with Lupus

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  • Eat a healthy diet— The challenge that many Black people have is balancing our traditional cooking with more healthy options. You can start by drinking more water and adding more fruits and vegetables

  • Having brown skin doesn't keep you from being sun burned. People with Lupus, especially skin Lupus should take precautions and always use sun protection. Exercise—getting regular exercise can help you manage your joint pain and fatigue.
  • The level and amount of exercise you do during a workout depends on how you feel. It is important to listen to your body and make sure that you don't push yourself too hard. If you are new to exercising or are experiencing a lot of pain, you may want to try something as simple as going for a walk or doing light yoga. It may help to talk to other people with lupus about how they exercise even when they are not feeling well.

  • Don't smoke—The chemicals in cigarette smoke can make lupus worse

  • Get plenty of rest— with our busy lives, it is hard to get the extra rest that your body requires when you have lupus. When you don't take the time to rest consistently, your body will let you know by shutting down, usually at the worst possible time

  • Talk with friends and family about your lupus— Lupus can be an invisible disease, so your friends and family may not understand that you are sick even if you look OK. Be patient with them and explain your disease and what you need to do to control your symptoms. When they understand, they will be better able to support you.
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For More information

If you are a lupus patient or family member of a lupus patient and need more information please send us an email to: NBCILupus@gmail.com to the attention of Rev. Anthony Evans. Please put in the Subject Line Lupus patient and please also give us your zip code.

Do You Want to Help NBCI?

If you are an individual, part of a faith-based community or member of a Black Women organization and want to participate and help NBCI raise funds for lupus, please send us an email to: NBCILupus@gmail.com, add your full name and address, the name of your church or organization and place in the subject line of the email "Want to Help". We will then forward you written instructions on how you and your organization can participate in this exciting movement to defeat lupus in our lifetime.

If you would like to sponsor a --Lupus High Tea Affair-- at your Church, please email NBCI for the instructions at NBCILupus@gmail.com.

We need your help. Thanks!

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Do You Have Lupus?

please feel free to contact NBCI: NBCILupus@gmail.com