Noor, a nine-year-old girl of Kashmiri origin was a regular child, with a keen interest in sports. Things were fine, until she started getting fussy about her food. Initially, her mother thought it was a passing phase, but it didn’t stop at that. Her cheeks started turning red when she played outdoors. Doctors advised her sunscreen thinking it was sun allergy. Then, gradually she started staying indoors, citing fatigue and tiredness. One day she complained of chest pain, a chest X-ray revealed a small amount of water deposit in her lungs and she was given antibiotics. On the way home, Noor suddenly collapsed in her mother’s arms. She was rushed back and admitted in ICU where after extensive tests she was found to have suffered a heart attack. Detailed evaluation by several doctors including a cardiologist and rheumatologist showed that Noor was suffering from lupus, which was causing the havoc in her life. Lupus is a chronic immune disorder which damages healthy tissues.
Though exact figures are not available, experts estimate that anywhere between one lakh to 10 lakh Indians suffer from this potentially debilitating disease.
Lupus or systemic lupus erythematosus (SLE) is a rare but frequently debilitating rheumatological disorder which is mostly misdiagnosed or undiagnosed. Lupus is known as the greater mimicker of the 20th century. That is because many of its symptoms like fever and rash are non-specific and occur in many other diseases. Some tests like anti-nuclear antibody help in its diagnosis but are not always helpful because many normal people may also have a positive anti-nuclear antibody test report.
Lupus is Latin for wolf and the name is derived from the fact that many patients with this disease, particularly fair skinned, mainly European, develop a facial rash which some imaginative physicians thought made them resemble a wolf. However, more than the rash, the disease itself behaves like a pack of wolves.
Skin rash is not common among Indian patients. Though manageable, recent studies have shown that patients with lupus have a very high risk of heart attacks and strokes compared to the general population. Lupus can be diagnosed in people of any age group, though majority of them are between 20 and 40.
One of the most disabling aspects of lupus is fatigue. Since fatigue cannot be measured, it is commonly dismissed by doctors and misconceived by patient peers to represent some kind of a psychological or psychiatric problem. A recent study in Europe demonstrated that lupus appears to affect the careers of nearly two third of the patients with around one third of them changing careers within one year of diagnosis.
Though lupus is known as “a women’s disease”, it does affect men as well. In fact, apart from children, men are known have the severest cases of the diseases. Lupus patients can develop various complications; many times despite being given proper medications and taking it regularly. One such case is of Ogava, a 29-year-old Tanzanian national, who frequented India for his export import business. On one of his trips he developed a rash over his face, pain in several joints and difficulty breathing. He was diagnosed with lupus and treatment started. He stuck to his medication. However, one day he developed severe pain in both the hips and was unable to walk properly. He thought it must be a muscle sprain; he got really worried when his right hand fingers turned blue and became numb. When rushed to the hospital, he was diagnosed with a condition associated with lupus called antiphospholipidantibody syndrome where the blood vessels which supply blood and oxygen to the limbs and organs suddenly gets blocked. His fingers were saved from gangrene and amputation, but doctors say his hips have to be replaced as blockage of blood supply has caused his hip bone to die.
Along with increasing the thickness of the blood antiphospholipid syndrome is a well-known cause of recurrent miscarriage. Research shows that around one in seven women with recurrent abortions have antiphospholipid antibody syndrome.
Finding Lupus
■ Lupus is a chronic immune disorder which damages healthy tissues.
■ Experts estimate that anywhere between one lakh to 10 lakh Indians suffer from this potentially debilitating disease.
■ Lupus or systemic lupus erythematosus is a rare but frequently debilitating rheumatological disorder which is mostly misdiagnosed or undiagnosed. One of the most disabling aspects of lupus is fatigue.
■ Some tests like anti-nuclear antibody help in its diagnosis but are not always helpful because many normal people may also have a positive anti-nuclear antibody test report.
In order to prevent serious problems, patients with lupus should regularly see their rheumatologist. This lets the doctor keep track of the disease and change the treatment as needed so that it can prevent potentially irreversible or permanent damage or disability. It is important that patients who have non-specific symptoms involving multiple organs, should get checked by rheumatologists. May 10 was observed as World Lupus Day to increase awareness about this potentially debilitating disease.