On the occasion of World Lupus Day, let us bust some myths about systemic lupus Erythematosus/Lupus (SLE)
Myth: Lupus is an infection and is contagious (especially as many of them have skin rashes)
Fact: Lupus is an autoimmune disease where our body’s immunity which should protect us from infections attacking from outside, attacks our own body. This results in multiple organs like skin, joints, blood, kidney, liver, lung, and heart getting affected. Most patients with lupus present with fever, weight loss, appetite loss, butterfly rash over the face, joint pains and swelling, hair loss, oral ulcers, fatigue, and the other symptoms depending on the organ affected.
Myth: I am alone in this fight against lupus. It is a very very rare disease
Fact: While lupus is a rare disease, you are not alone in this fight. There are more than 5 million people affected with lupus worldwide and In India, lupus occurs every 3-4 per 1 lakh persons or maybe even more than that. With better health care facilities today, more lupus patients are being detected.
Myth: Lupus is a hereditary disease and if I have lupus, my child would also get lupus
Fact: The reason why one gets lupus is usually multifactorial. Genes, hormones, environment, stress, smoking, certain viral infections, and smoking have all been implicated in causing lupus. As so many factors are involved and the risk genes for lupus are multiple, it is not common to find lupus patients clustering in the same family. So the chances that your child will have lupus if you have lupus are very less.
Myth: I have lupus, so I will die
Fact: Lupus is not a uniformly fatal disease. When there was no treatment for lupus, 90 percent would die in the first 5 years, with the advent of treatment in the 1950s, the 5-year mortality had decreased to 50 percent and with the current treatment available, the 5-year mortality is less than 10 percent. Most lupus patients have a mild to moderate disease which can be effectively controlled with medications available. Only a few with severe diseases not responding to or those who default medications could have a life-threatening disease.
Myth: Lupus has no treatment except steroids
Fact: Science today has moved way beyond using only steroids for the management of lupus. While steroids are also an essential part of treatment, especially in severe diseases, your rheumatologist would always try and taper the steroids at the earliest. Instead, the immunosuppressants which are medications that can keep your disease under control are continued for the longer term. All medications used for lupus are not steroids.
Myth: With a healthy diet, regular exercise, and stress-free life I can manage lupus and I don’t need to take medications
Fact: While a healthy diet, regular exercise, stress-free life, protection from sunlight, and personal hygiene is all-important in preventing lupus disease flares (flare is when an inactive disease becomes active again), certain medications have to be continued for long term and at times for life in lupus. The medications that are important to you and how they need to be changed shall be decided by your rheumatologist and hence, regular monitoring and follow-up are extremely necessary.
Myth: A lupus patient can never become pregnant or have a safe pregnancy
Fact: If a lupus patient plans pregnancy at the right time (when the disease is under adequate control for some time) and under the guidance of a rheumatologist, most of the time they will have a normal, healthy, and safe pregnancy and a normal and healthy child. The monitoring during pregnancy may be a little more for lupus patients compared to healthy individuals. For certain pregnancies, new medications may have to be added. Consult your rheumatologist and inform them priorly when you want to plan a pregnancy.
Having lupus is definitely an unfortunate thing to happen, but giving up is definitely not the solution for it. Quoting one of my patient’s words, ‘Be a warrior and not a worrier. Trust your doctor, take your pills, eat healthily, exercise regularly, overcome lupus and lead a safe, happy, and healthy life.
(Dr Keerthi Talari is Consultant Rheumatologist, Yashoda Hospitals, Hyderabad)
