SJS/TEN (Stevens Johnsons Syndrome/ Toxic Epidermal Necrolysis) are rare, life-threatening, and vision-threatening diseases. These diseases are caused by allergies to medications and, in some cases, by certain viral infections. Most known drugs to cause SJS/TEN are Sulfonamide, Nimusulide, Lamotrigine, Allopurinol, Nevirapine, Carbamazepine, Fluoroquinolones, NSAIDS, ETC. There are other drugs, too.
There is the involvement of skin and mucosa in acute SJS/TEN. Once the patient recovers from the acute phase, almost all systems recover except the eyes. These diseases cause permanent damage to the ocular surface. Dermatologists play a significant role in the treatment of acute SJS/TEN. Active immunosuppression, under strict antibiotic coverage, in the intensive care unit is an integral part of treatment. Ophthalmologists also play a crucial role in saving eyes in cases of acute SJS/TEN. Failing this, chronic debilitated eye disease starts. These eye diseases range from severe dry eyes, cornea whitening, corneal infection, recurrent corneal abrasion, corneal perforation, lids sticking to the white portion of eyes, even to the cornea, misdirected eyelashes pricking in eyes, cataract, glaucoma, recurrent red eyes, unable to bear even regular lights, etc. All these conditions may significantly impact a patient’s day-to-day life, affecting their mental, emotional, financial, family, and social well-being. Chronic conditions require lifetime treatment and regular follow-up with a specialist.
Patients must receive the appropriate and timely treatment during acute SJS/TEN to reduce the severity of future debilitating eye disease.
There are very few centers and doctors in India and the world who are actively treating these chronic debilitated SJS/TEN eye diseases. It is essential to guide these patients for proper treatments. There is no permanent treatment for these eyes. However, recent advances in treatment have enabled patients to lead active and productive lives.
The SJS Eye Disease Support Group of India runs for these patients, helping them connect with the nearest SJS specialist. This group also works to boost their morale and provide emotional support.
SJS /TEN eye disease is a rare disease, but it is still not included in governmental rare disease programs. These patients fight
