Lupus warriors aim to make their silent disease visible this year

May is dedicated to spreading awareness about lupus, a debilitating autoimmune disease. In connection with it, World Lupus Day was observed across the globe a fortnight ago on the 10th.

But in Pakistan, the day was not marked in any significant way. The day went by as silently as the disease itself, which attacks people out of nowhere, often leaving even doctors guessing at the diagnosis.

Had I not been fatigued because of lupus and the myriad medications I take to keep on going, I would’ve written something about it two weeks ago. But that’s what this disease does to you. It puts a wrench in all your plans and imposes itself on every aspect of your life.

Lupus is a chronic autoimmune disease in which the body’s immune system attacks its own tissues, making it difficult to fight infections. According to Johns Hopkins Medicine, lupus manifests in four different forms: systemic lupus, cutaneous lupus, drug-induced lupus and neonatal lupus.

It causes inflammation and pain in different parts of the body, especially the connective tissues, which include skin, joints, tendons, muscles, the central nervous system, and internal organs like kidneys, heart and lungs.

Comprehensive data on lupus in Pakistan, like all other data, does not exist. However, there are globally about five million people who are living with lupus. Incidentally, more than 90 per cent of lupus warriors are women between the ages of 15 and 44, generally referred to as the childbearing age.

Nisha* suffered from three miscarriages by the time doctors figured out she had lupus. She still considers herself lucky, as on average it could take up to six years to finally get a lupus diagnosis. Now she is the mother of a healthy baby and is planning on her second one.

Hidden disabilities

Living with a disease is difficult, and living with a chronic illness more so. But add to that apandemic, and you have a recipe for increased stress and an extremely demanding situation.

Stress has been identified as a major trigger for various illnesses, from cardiovascular disease to depression, anxiety, asthma, diabetes and also autoimmune diseases. Chronic illnesses result in various disabilities for millions of people, but nobody can tell because these disabilities are often invisible.

Maria* has to often use braces for both her hands and feet since she has difficulty walking and holding on to things when she’s going through a flare. She suffers from synovitis and tendonitis. “Tasks as mundane as combing my hair or brushing my teeth become difficult when I’m going through a lupus flare,” she said.

Varying symptoms

In lupus, each person can have a number of different symptoms. One of the reasons lupus is difficult to diagnose is that the symptoms vary individually. If Maria suffers from muscle and tendon issues, Qurat* has vasculitis and low platelet count.

“I was only 15 years old when I fainted and was admitted to the hospital with low platelet count,” said Qurat, who has been living with lupus for the past 20 years. People with lupus can experience significant pain, extreme fatigue, hair loss, cognitive issues, and physical impairments that may affect their daily life. Many lupus patients may also suffer from cardiovascular disease, strokes, disfiguring rashes and painful joints. According to research, lupus can be life-threatening, as estimates suggest 10 to 15 per cent patients die prematurely due to lupus complications.

Many with lupus suffer from multiple autoimmune diseases like vasculitis, Raynaud’s phenomenon, rheumatoid arthritis, Sjogren’s syndrome, etc. This results in the patients getting prescribed a multitude of medicines to suppress their immune system, which makes them vulnerable to catching infections.

Impact of Covid

Lubna* shared her recent experience with Covid. “People have to follow Covid SOPs now, but as a lupus warrior, I have to follow this regime even without a pandemic. You’ll always find a hand sanitiser and a mask in my bag,” she said, explaining that Covid has made her even more careful. “But one mistake resulted in days of misery for me.” Lubna had a mild case of Covid and was not admitted to the hospital. “My rheumatologist considers me really lucky.”

According to WHO, due to Covid-19, focus on prevention and treatment of non-communicable diseases (NCDs) has declined, especially in developing countries. NCDs are diseases that can’t be transmitted directly from one person to another. These include strokes, most heart diseases, most cancers, diabetes, chronic kidney disease and autoimmune diseases.

‘Make lupus visible’

World Lupus Day was started by the World Lupus Federation. It was made possible through coordinated efforts of its global affiliates, who work together to create greater awareness and understanding of lupus, provide education and services to people living with the disease, and advocate on their behalf.

This year’s goal is to ‘Make Lupus Visible’ using social media to show the world the many faces of lupus and the impact of this debilitating autoimmune disease.

Lupus has many early warning signs that if recognised can save lives and make living easier for those who have the disease. In Pakistan, it would be a good start to at least have a national registry to understand survival analysis and prognostic indicators of SLE patients.

*Names changed to protect privacy