The Autoimmune Disease Called Lupus

I was diagnosed with lupus almost a decade ago. I am from a well-educated family but when I was diagnosed, I knew nothing about this disease. After suffering for years due to mild symptoms, I was eventually diagnosed after a stroke and organ damage. Only the physicians in my family knew about lupus and the rest of us had never heard the name.

Just recently I discovered lupus mostly affects women especially women of colour. The Lupus Foundation of America estimates that 1.5 million Americans have some form of lupus, 90% of them are women. Women of colour are twice as likely to have lupus than white women. Recent research indicates that lupus affects 1 in 537 young African American women.

Lupus is two to three times more prevalent among women of colour — African Americans, Hispanics/Latinos, Asians, Native Americans, Alaska Natives, Native Hawaiians, and other Pacific Islanders — than among Caucasian women

Lupus a leading cause of death

A Lupus Foundation of America funded study found that overall, lupus was among the top 20 leading causes of death in females ages 5–64. Among black and Hispanic women lupus ranked 5th in the 15–24 years, 6th in the 25–34 years, and 8th-9th in the 35–44 years age groups, after excluding the three common external injury causes of death from the analysis.

Lack of awareness

There are many lupus foundations spreading awareness but still, I often meet people who have never heard of this disease.

Research on lupus awareness shows out of 1,241 respondents 63% of Americans surveyed have never heard of lupus or know little or nothing about this disease and its symptoms, presenting a significant opportunity for continued public education.

30% responded that they had heard of the disease, but know very little about it; 19% say that they have heard of the disease but know nothing about it, and 14% responded that they had never heard of the disease. (Note: Individuals who said that they had not heard of lupus were excluded from the remainder of the survey).

Lupus often goes undiagnosed

The systemic lupus erythematosus (SLE) is a chronic autoimmune disease that often goes undiagnosed initially. Timely detection of SLE is important because prompt treatment can prevent its many major complications — notably, end-organ damage.

It is a disease with “a thousand faces”

If you have lupus, your body is always fighting with its own self, you never know when it will break down. It is difficult to diagnose because the symptoms are different from person to person, they mimic the symptoms of many other diseases, and they can come and go. It can sometimes take several years to receive an official diagnosis.

Recently published results from a LUPUS UK survey have revealed that lupus patients in the UK experience an average delay of 6.4 years between developing initial symptoms and reaching a diagnosis. In addition, the survey showed no change in this delay to diagnosis over recent decades despite efforts to improve the identification and diagnosis of this disease.

I had a similar experience with lupus it took me over a decade to get proper diagnosis and treatment.

Women tend to put others first and ignore their own symptoms

At times the delayed diagnosis is a result of our own prioritization, women often tend to put others first and ignore their own problems until something serious happens.

We as women are often so involved in looking after our kids, husband, parents, and even other family members that we at times don't even care for our own suffering until it develops into something very serious and uncontrollable.

What we don't understand is that this is not good for either of us. If we are not healthy how can we take care of our loved ones? I got a strong realization of this truth when I was being taken to the intensive care and I could see my kids in the waiting room waving at me. I didn't know if I would see them again.

“If you want to have enough to give to others, you will need to take care of yourself first. A tree that refuses water and sunlight for itself can’t bear fruit for others.”

– Emily Maroutian

The health inequality

Women who finally recognize their pain and seek help are often not taken seriously. We are told to ignore our pain and it is a general perception that women have a low pain threshold which is absolutely wrong considering the amount of pain we feel during childbirth.

Women are less likely to have their pain treated and their symptoms are not taken seriously, their diagnosis is delayed as compared to men. Their bodies, and the conditions that primarily affect them, are less likely to have been studied in clinical trials (which make effective treatments difficult to find). Even medical products used only by women — like the oral contraceptive pill — are based on male bodies (in the case of the pill, male hormones).

Recently organizations like women equality WE and trying to highlight these problems and make a difference.

What exactly is lupus?

Lupus is a systemic autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart, and lungs.

Some people are born with a tendency toward developing lupus, which may be triggered by infections, certain drugs, or even sunlight.

Fatigue is a major factor in lupus life, and very difficult for the specialist to treat. The fatigue may be severe, fleeting, or persistent and can form a vicious circle, as the tired patient is unlikely to exercise and without exercise can become lethargic.

Commonly known lupus symptoms

The most common lupus symptoms are:

Extreme fatigue (feeling tired all the time)

Pain or swelling in the joints

Swelling in the hands, feet, or around the eyes

Headaches

Low fevers

Sensitivity to sunlight or fluorescent light

Chest pain when breathing deeply

Many people with lupus also have problems that affect their skin and hair, like:

A butterfly-shaped rash on the cheeks and nose

Hair loss

Sores in the mouth or nose

Fingers and toes turning white or blue and feeling numb when a person is cold or stressed (Raynaud’s Disease)

Lupus has no cure

Treating lupus is a lifelong process. It requires ongoing planning and communication. The goals of treatment are to manage current symptoms, prevent future flares, and prevent damage to joints and organs by calming the immune system.

Over the past decade, I have seen many faces of lupus from extreme fatigue, never-ending flares to ICU visits even mechanical ventilation.

I never knew something this serious could be invisible to the rest of the world.

Right now, there’s no cure for lupus but I deeply wish that by spreading awareness to the severity of this disease there will be more research into it, and someday a cure will be found.