Black Women and Lupus: How it effects us and our hair
Initially, I noticed small signs of hair loss, which eventually became more severe. Throughout this journey, I faced dismissive and insensitive doctors, which taught me the importance of self-advocacy for my health.
The potential side effects of lupus are vast, highlighting the critical need for ongoing research.
As a former natural hair enthusiast and pregnant woman, I initially assumed I was experiencing postpartum hair loss. However, the development of skin lesions and significant hair loss and thinning led to my diagnosis of discoid lupus, a chronic illness I was unfamiliar with. It is crucial for young women in similar situations to see my story as an example of the importance of self-care and vigilance in health matters.
Living with this chronic illness has required me to adjust and accept a new way of life, especially given that doctors currently say there is no cure. Despite the challenges, I'm grateful for the opportunity to prioritize my well-being and adapt to a healthier lifestyle!
According to the CDC, Lupus occurs more often in women from racial and ethnic minority groups than in non-Hispanic White women. Black or African American and Hispanic women are often diagnosed with lupus at a younger age and have more severe symptoms and greater risk of developing other diseases and conditions than non-Hispanic White women. This can lead to lupus progressing further or faster and a greater risk of death. Social determinants of health (SDOH), along with hormonal and genetic factors, can lead to more severe disease and higher risk of death in racial and ethnic minority groups. Public health programs to reduce lupus among racial and ethnic minority groups should focus on the many factors that contribute to these disparities.
Symptoms of lupus vary and can appear off and on for years. Because lupus can affect different parts of the body, it can cause a lot of different symptoms. Common symptoms include:
Pain or swelling in the muscle and joints
Extreme fatigue
Butterfly rash on the cheeks and nose
Swelling in hands, feet, or around the eyes
Headache
Fever
Chest pain or breathing deeply
Hair loss
Fingers and toes feeling numb or turning white or blue (Raynaud’s Disease)
There’s a lot that women can do to manage lupus. Women with lupus can have a typical lifespan and a high quality of life. Women can take steps to control symptoms, prevent lupus flares, and cope with the challenges of lupus. The best way to keep lupus under control is by following treatment plans and maintaining good general health. Women with lupus should:
Learn how to tell that a flare is coming.
See their doctors regularly.
Limit the time spent in the sun and in fluorescent and halogen light.
Get enough sleep and rest.
Build a support system made up of trusted people they can go to for help.
Self-management education workshops can help people with lupus learn how to manage daily life, medications, and interactions with doctors, as well as improve energy and pain management. Visit Managing Lupus for more information about self-management education programs and other tools and resources that can improve quality of life for people living with lupus. Use of online tools and applications (apps) can be an important part of managing lupus. Strategies to Embrace Living with Lupus Fearlessly (SELF) is a free online self-management app designed to help women with lupus manage symptoms, stress, and medications, as well as work with their healthcare teams.
Despite best efforts to follow treatment plans and maintain good health, women may have times when their lupus symptoms become worse. Women can talk to their doctors about ways to relieve symptoms when this happens.
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