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10 MAY World Lupus Day:  Lupus Should be Covered Under Ayushman Bharat PMJAY

Lupus can worsen during pregnancy, therefore, pregnant women with SLE are considered high-risk pregnancies. Read a special article by Prof (Dr ) Uma Kumar

 

world lupus day
Prof (Dr ) Uma Kumar
HoD Rheumatology, AIIMS, New Delhi &
WHO Fellow

New Delhi/ SBM Special
Systemic lupus erythematosus or Lupus is a systemic autoimmune disease which affects multiple vital organs of human body like kidneys, lungs, heart, nervous system etc. during the course of illness.
It is ten times  more common in females in their reproductive age group but can affect any age group. The prevalence of SLE varies from  5.8 to 130 per 100,000 population.
Symptoms of Lupus
Diagnosing lupus is often difficult as its presentation mimics those of other common ailments. However, in majority of cases it presents with fever, skin rashes particularly butterfly rash over face, oral ulcers, joint pain/arthritis and fatigue. Lupus is known to affect vital organ like kidney, nervous system and lungs etc.
Chronic ongoing inflammation in untreated patients lead to development of various comorbidities like heart attacks, hypertension, diabetes, stroke.
Definite etiology of lupus is largely unknown but many environmental factors like viral infections, ultravoilet light, smoking, air pollution and  certain drugs are known to trigger the disease process in genetically predisposed individuals. But, it is not hereditory or contagious.
Diagnosis is made by ordering certain blood investigations in a suspected patient of lupus and ANA (antinuclear antibody) remains the most important screening investigation.
30% of lupus patients are found to have antiphospholipid antibodies which further increase the chances of miscarriage, still births and clogging of blood vessels.
How can lupus affect pregnancy or the newborn?
Lupus can worsen during pregnancy, therefore, pregnant  women with SLE are considered high-risk pregnancies. For successful outcome close supervision under rheumatologist together with an obstetrician is a must. Certain specialised immunological blood tests which influence pregnancy outcome are done to risk stratify pregnancy. These women require close observation during pregnancy, delivery, and during postpartum period. Women with SLE who have antiphospholipid antibodies may need blood-thinning medications (aspirin, he durinparin during pregnancy to prevent miscarriages.
Certain autoantibodies can cross placenta to reach foetus and can result in a condition called neonatal lupus where electrical activity of baby’s heart can get altered leading to heart block.
No permanent cure but tretable with drugs
There is no permanent cure for lupus but majority of patients lead a normal life on treatment.  Wide variety of drugs like Hydroxychloroquine, mycophenolate_mofetil, steroids , cyclophosphamide , Azathioprine, Calcineurine inhibitors , Rituximab etc are administered depending upon the extent and severity of lupus, patient preference etc.
Despite being on medicine patients can develop flare of disease periodically which is usually managed by varying  medicines. Since ultraviolet light can precipitate flares, patients should avoid sun exposure. Sunscreens and covering the sun expose part with clothing can be helpful. Abruptly stopping medications, especially corticosteroids, should be avoided.
Society Must Understand impact of Lupus
It is important for families and the society in general to understand this disease ‘Lupus’ which can affect anyone at any point in time. Do not stigmatize women with lupus. Help lupus patients in coping with the disease by supporting them mentally and socially.
The financial burden
The financial burden of this disease is tremendous because of prolonged treatment with multiple drugs, unexpected hospitalisations, frequent monitoring visits and check-ups and no recognition of lupus under the ‘critical illness’ label by insurance companies, in India. Also, this illness is not covered under Ayusman Bharat or PMJAY.
 
 
 
 
 

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