Lupus LA Panel
By: T. Felder
Los Angeles, CA (The Hollywood Times) 4/13/22 – THT was able to sit in on a live discussion from the Lupus LA webinar. The panel discussed their experiences with Lupus and how it has changed them and their loved one’s lives. Lupus is a disease that occurs when your body’s immune system attacks your own tissues and organs (autoimmune disease). Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart, and lungs. Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of lupus — a facial rash that resembles the wings of a butterfly unfolding across both cheeks — occurs in many but not all cases of lupus. Some people are born with a tendency toward developing lupus, which may be triggered by infections, certain drugs or even sunlight. While there is no cure for lupus, treatments can help control symptoms (mayoclinic.org).
Three out of the five panelists have been diagnosed with Lupus. Health professional Liz Morasso says, “in the Lupus community family support and social support have been shown to be improving pain, depression, and anxiety, as well as helping patients feel safer, which aids them in advocating for themselves.”
Lupus caregivers should be effective communicators as they will more than likely deal with their patient’s employers, health-care professionals, insurance representatives, friends, and family members. They must also listen to their patient’s needs, prepare them for difficult subjects such as finances, insurance, and the side effects of treatment.
Vania Dzib was only ten years old when she found out she had Lupus. Her primary care doctors dismissed her pain. It wasn’t until her mother took her to Los Angeles Children’s Hospital where doctors confirmed her diagnoses. Being so young made it difficult for Dzib to communicate her pain, so having her mother by her side played a significant role in allowing her to manage her treatment. During the webinar Dzib said “sometimes I don’t like taking my medication, but I know my mom is going to be right there telling me all the reasons why I should. I want to be healthy for myself and my family.”
Juana Mata and her sister Estela Mata were also panelist during the webinar. Juana says her initial diagnosis did not really mean anything to her, but once she saw her sister Estela’s expression she began to worry. Estella emersed herself in research, but in 2009 there hadn’t been many studies on the subject, so her search was difficult. She also found it exceedingly difficult to find resources that were available in Spanish. Eventually she came across Lupus LA, where she was able to obtain the information and support needed to educate Juana, other family members, and herself.
Here are some Lupus statistics via Lupus.org :
How common is lupus and who does it affect?
- The Lupus Foundation of America estimates that 5 million Americans, and at least five million people worldwide, have a form of lupus.
- Lupus strikes mostly women of childbearing age. However, men, children, and teenagers develop lupus, too.
- Ninety percent (90%) of people living with lupus are women. Most people with lupus develop the disease between the ages of 15-44.
- People with lupus can experience significant symptoms, such as pain, extreme fatigue, hair loss, cognitive issues, and physical impairments that affect every facet of their lives. Many suffer from cardiovascular disease, strokes, disfiguring rashes, and painful joints. For others, there may be no visible symptoms.
- Our best estimate based on available data on incidence is 16,000 new cases per year. The Centers for Disease Control and Prevention (CDC) are currently gathering updated data for all ethnic sub-populations in the US, so we anticipate this number will change. The fact remains that lupus is a devastating and life-changing disease that currently has no cure.
If you or anyone you know has been diagnosed with Lupus and need access to resources, please visit Lupusla.org