A Town Hall Meeting: Black Women, Lupus & Chronic Illness

by
Kimberly Noble, Advocate Training Program Participant

On October 28, 2004, CABWHP held an informative Town Hall Meeting entitled "Black Women, Lupus & Chronic Illness: Healing the Bodies & Souls of Black Women." The meeting took place in the Community Room at the Fox Hills Mall in Culver City and was co-sponsored by Senator Sheila Kuehl, Assemblymember Mervyn Dymally and the "Loop Us Together" Support Group.

Prior to this meeting, I had no idea what Lupus was. However, by the end of this meeting, all of that changed. Crystal Crawford of CABWHP began the meeting by sharing some startling statistics. According to the Alliance for Lupus Research, although 1 in 700 Caucasians are diagnosed with lupus, Blacks are three times as likely to be diagnosed. That's nearly 1 in 250 Blacks and 90% of all cases in Black people are in Black women. After listening to this, I was ready to hear more from the panel.

The panel of speakers was diverse. The panel included: Karen Lawrence of the Center for Lupus Care, who provided a comprehensive overview of Lupus; Dr. Mesha Ellis of Pepperdine University spoke about the impact of Lupus on mental and emotional health, Kiara Harris (H & H Ecoprises), provided insight from the perspective of a working woman living with lupus; and Rhea Durr (Representative from the office of Senator Sheila Khuel - 23rd Senate District) put a political spin on the discussion.

As the first speaker, Ms. Lawrence, who is also living with illness, gave a brief definition of lupus. Basically, Lupus is an autoimmune disease that can affect virtually any system in the body. One can think of it as a 'self-allergy' where the body attacks its own cells and tissues. Also, Lupus often mimics rheumatoid arthritis along with other diseases. Ms. Lawrence called Lupus the "look good, feel bad" disease. Therefore, often doctors don't take women's complaints seriously. She also stressed the fact that we must demand answers from our healthcare providers and advocate for ourselves so that providers run ALL of the tests needed to diagnose and treat Lupus.

Ms. Lawrence also discussed the signs of lupus. You only need four (4) of the following symptoms to be considered a candidate for lupus:

  • Sun sensitivity (Dermatologist)
  • Mouth sore (Dentist)
  • Butterfly rash, specifically on the nose and/or chin
  • Discoid lesions
  • Inflammation of the lining of the heart and/or lungs
  • Central Nervous System (CNS) disorders
  • False positive syphilis test results (OB/GYN)
  • Extreme fatigue
  • Raynaud's Syndrome (a problem with the way arteries carry blood to your fingers or toes that results in red, white, or purple hands and feet).

Dr. Ellis spoke profoundly about the necessity of psychotherapy for women impacted by Lupus. She talked about how psychotherapy has been shunned in the Black community because most think that they have to be crazy to seek help. Sisters are hesitant to participate in counseling because of the "Black women are suppose to be strong and don't need help" syndrome. Many Black women are in denial and believe that God will make a way. Dr. Ellis believes that God can heal. However, "God has also equipped therapists/people to help us with such problems; not to undermine their beliefs."

As a working woman living with Lupus, Ms. Harris wants to find ways to work with employers regarding hours and pay when lupus symptoms flare up. Ms. Durr spoke of a possible solution to the problem of women's healthcare being linked to their employers -- a bill that will require that all Californians receive universal health coverage. Senator Kuehl will continue to back that bill (SB 921) in the upcoming legislative session.

After the presentations of the speakers, the floor was then turned over to the audience. It became even more interactive when one of the audience members, Dr. Julie Fuller, a member of the CABWHP Policy Advisory Group, joined the panel. She reminded us to be armed with an AGENGA when we see our physicians. If our needs are not being met, MARCH! A male audience member stood and spoke if his challenges as a male living with the illness. He even volunteered to become a mentor to an audience member's son who living with lupus.

There is still much community education to be done about Lupus. We all should watch for symptoms (in the people we love--including ourselves) and do research on our own. An important resource mentioned at the meeting is The Lupus Book by Dr. Dan Wallace, which can be purchased from the The Center for Lupus Care in Inglewood, 310-674-0080. The "Loop Us Together" Support Group meets monthly and can be reached at LoopUsTogether@aol.com.