What is lupus?

Lupus is a chronic auto-immune disease that affects around 1.5 million Americans according to the Lupus Foundation of America

Overview

Lupus is a chronic auto-immune disease that affects around 1.5 million Americans according to the Lupus Foundation of America and millions more worldwide. It is known as “The Great Imitator” because lupus symptoms mimic the symptoms of other diseases, making it difficult for doctors to diagnose. The most common form of the disease is Systemic Lupus Erythematosus or SLE, and it can cause inflammation, pain, and swelling throughout the body, and damage to internal organs.

What is an autoimmune disease?

A properly functioning immune system is made up of several organs of our body that generate various immune cells that mature and enter into our blood circulation. These cells are trained to find invading bodies such as bacteria or viruses and destroy them, a process which causes inflammation in the body.

An autoimmune disease is what happens when your immune system does not function the way it should. Along with fighting invading bodies, your immune system attacks your own cells, and in the case of an autoimmune disease like lupus, causes inflammation in different parts of the body like the skin, joints, and various organs. Essentially, the immune system is overactive, as it cannot tell the difference between foreign invaders and your body's healthy tissues.

What makes it chronic?

Lupus is chronic in that there is no start or end date—it’s lifelong. What is somewhat unique about SLE is that the symptoms are not constant, but marked by “flares,” or periods of time when patients experience the symptoms, and breaks of “remission” in between.

Early Lupus Symptoms

While anyone can develop lupus, it mainly affects women aged 15-44. Each year, more than 16,000 new cases of lupus are reported across the U.S. Lupus is unpredictable and a disease of flares, with fluctuating symptoms. Early lupus symptoms include fatigue, swollen joints, and skin rashes and lesions. One particular rash that lupus warriors get is the butterfly rash on the face, which is from an excessive amount of UV exposure (keep reading to learn more about this).

Lupus Treatment

There is currently no cure for lupus. Because each person experiences the disease and its symptoms differently, doctors generally work together with the individual to design a management plan made up of off-label drugs (drugs not specifically designed for lupus treatment) and various other treatments and therapies. With proper medical care, most people living with lupus can lead a full life. It is therefore crucial that the lupus fighter keeps track of their disease, their symptoms, and their environmental triggers so they can manage their disease smoothly.

Living with Lupus: The Unpredictability

Since lupus is unpredictable, it can have an emotional as well as physical toll on the lupus warrior herself. It may become harder to maintain a career and social life. Even with certain treatments and medications, there are side effects that make it difficult to live "normally." There are many communities both online and in real life that cater to alleviate these pain points and provide moral support for people living with lupus.

Lupus and Photosensitivity

One of the biggest triggers to lupus flares is ultraviolet rays (UV). UV comes mainly from the sun, but can also come from indoor lighting. People with lupus have abnormal reactions which vary by the person and body. Lupus skin rashes are most common reactions to UV exposure.

On a basic level, protection from UV consists of wearing long sleeves and pants (even on hot summer days) and wearing a lot of sunscreen.