I went into the field of Rheumatology because I felt I could make a difference. I first encountered “Lupus” when I met an African American girl during medical school and we became friends. She was diagnosed with Lupus and passed away from complications. She didn’t feel like she had a good relationship with her physician and didn’t understand the nature of this serious disease.
Then during my internship and residency, I encountered so many women from the Black and other minority communities that had delayed diagnosis or didn’t receive adequate education about this disease. I knew in residency that I wanted to make a difference and help highlight this autoimmune disease that affects so many females, especially Black females. I wanted these females to develop a relationship with a physician that they felt comfortable speaking with and they could relate to.
The Lupus Foundation of America estimates that 1 in 250 African American women will develop lupus and Lupus is 2-3 times more prevalent among women of color! Minority women tend to develop this disease at a younger age.
It is now known based on research in recent years that individuals with Lupus from racial and ethnic minority populations develop more kidney and neurological manifestations as well as blood abnormalities like low platelets or antiphospholipid syndrome (APS) compared to the Caucasian population with this same disease. Black, Asian and Hispanic patients may experience more rapid progression of their disease and complications sooner after their diagnosis is established. Minority patients also have been found to have less social support for their disease.
The annual death rate from Lupus is also highest among Native Americans and Blacks.
It is my honor and duty to educate the Black community about this autoimmune disease so they may have the knowledge to communicate with their physicians and take action to prevent early morbidity and mortality.
HERE ARE SOME COMMON LUPUS MYTHS:
MYTH #1: LUPUS only affects women?
TRUTH: Although 90% of individuals who are affected are females of minority populations, Lupus CAN affect males (approx. 40%). Often when Lupus is diagnosed in males, the disease is worse and will often involve the kidney and skin. Males need to be aware of symptoms so there is not a delay in diagnosis and treatment! I have met so many male LUPUS WARRIORS as well. Women may be affected more due to hormonal factors and issues related to the X sex chromosome.
MYTH #2: There is a single reason for having Lupus or it is contagious like an infection?
TRUTH: Lupus is an autoimmune disease that causes your immune system to produce proteins called autoantibodies to attack your own tissues and organs instead of a foreign agent or substance. Although a virus can trigger an immune response or flare, Lupus IS NOT a viral or bacterial illness that can be passed on to another person by respiratory droplets or contact. Other factors causing lupus may be genetics, hormones, sunlight (UVA/UVB), and certain medications.
MYTH #3: You can’t consider family planning or pregnancy if you have Lupus
TRUTH: Although women with lupus may experience some infertility or pregnancy-related issues related to their disease activity or the medications they are on, THEY CAN have a full-term pregnancy. The processes that are involved in the immune response of females with Lupus may affect the fertility stages including ovarian failure, implantation failure, and pregnancy loss. Pregnancy complications are more common in women with Lupus. They are more at risk for
- Still births
- Preterm births
- C sections
It is important to know that there are resources for family planning. The American College of Rheumatology (ACR) offers Reproductive Health guidelines and there is also now the HOP-STEP website/program for Lupus patients (founded at Duke University Medical Center) which assists patients with family planning and provides an option for individuals to share their feelings openly and allows the physician to offer guidance based on the provided information. It is recommended that patients make sure that their lupus is in control for at least several months (preferable 6 months or more) before considering getting pregnant. There are medications that treat lupus that are also compatible with pregnancy.
MYTH#4: Lupus is diagnosed based on ONE specific test or symptom.
TRUTH: No. The diagnosis of lupus may be delayed because it is considered to be a “Great Imitator or Mimicker” of many other diseases. Lupus is a very complex diseases characterized by chronic inflammation resulting in the body’s immune response attacking healthy tissue and resulting in organ damage.
There is a blood test, antinuclear antibody, ANA that may be seen in most lupus patients but this test is also seen in many other diseases. There are other specific blood tests or autoantibodies that can be seen in this disease (dsDNA ab, smith antibody, RNP).
A “classic erythematous butterfly rash” that is seen across the middle of the face may be present in some patients but NOT ALL patients will have this cutaneous rash.
There are clinical symptoms and criteria that need to be met. These symptoms/signs may include oral/nasal ulcers, photosensitivity, inflammation in the heart or lungs, kidney problems or problems with the urine (protein, blood), arthritis or musculoskeletal problems, other rashes, seizures, psychosis, headaches, blood disorders, or other nervous system problems. A certain number of symptoms have to be met in addition to blood work in order to be diagnosed with lupus.
Lupus patients may also experience hair loss or Raynaud Phenomenon (discoloration of fingertips/toes due to restricted blood flow) but these are not part of the former criteria diagnostic list.
Now the American College of Rheumatology and European League Against Rheumatism have approved a new Lupus classification criteria using a point system to help in how the disease will be studied in the future. Please speak with your rheumatologist or physician about your symptoms and whether you meet classification criteria.
MYTH #5: If I get Lupus, it is a death sentence.
TRUTH: There are 4 types of lupus. There is systemic lupus erythematosus, cutaneous lupus, drug-induced lupus, neonatal lupus. Systemic Lupus involves many organ systems including the joints, skin, lungs, heart, bone marrow, brain, and nervous system. Individuals may have mild activity while others have moderate to severe activity involving may organs or severe organ damage. There are medications such as Hydroxychloroquine (Plaquenil) that has been shown in studies to improve lupus survival. There are other medications used to aid in disease activity such as Belimumab (Benlysta), Azathioprine (Imuran), and Mycophenolate Mofetil (Cellcept). Steroids are also used to treat flares.
Heart Disease is a leading cause of premature death in this population so making sure that blood pressure, cholesterol and weight are under control, eating right, exercising, reducing stress, and not engaging in smoking are essential to prevent cardiac death. If a diagnosis is made early and a treatment plan is initiated and monitored frequently, an individual can have a fulfilling and active life living with this autoimmune disease. The priority is to try and control the disease as early as possible and maintain low disease activity or remission.