A 16-year-old Bangalore-based girl battled a rare autoimmune disorder and secured distinction in her SSLC exam.
Sushma DS was diagnosed with juvenile dermatomyositis two years ago. Juvenile dermatomyositis is a rare autoimmune disorder, where the immune system attacks blood vessels throughout the body causing muscle inflammation. “I suddenly developed high fever, cold and swelling on my face one evening. My parents took me to a physician near my house. With his medication, I did feel better but these episodes started recurring again. Then I visited Aster CMI hospital,” she says.
“Her hands and legs had also completely swollen, and she was developing rashes. On the way to the hospital, she fell unconscious. We quickly consulted the doctor who told me that she is in a very critical condition and fighting for her life with a rare disease that is affecting major parts of her body. We were shocked and did not know what to do. But all we understood was that there was very little time left to save her, so we immediately admitted her in ICU,” says Sujatha, Sushma’s mother.
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As the disease had severely affected her chest muscles and kidneys, she had to undergo dialysis, blood transfusions, and required ICU supports along with steroid medications. She had developed respiratory failure and had to be on ventilator support. She had to miss her school for almost half a year but she managed to study and pass class 9 with the help of her teachers and fellow classmates at BEL High School in Jalahalli.
Sushma DS
Dr Sagar Bhattad, Consultant, Pediatric Immunology and Rheumatology, Aster CMI Hospital says, “Dermatomyositis is a rare auto-immune disease where the immune system attacks organs and tissues of the self. There is no particular reason or cause of this disease. In Sushma’s case, she had severe muscle weakness and was unable to walk and breathe. By the time she was brought to the hospital, she had already developed respiratory failure and was put on ventilator support. Due to prolonged ventilation for more than a month, we had to conduct a tracheostomy enabling her to breathe. Later her kidneys had also shut down and she was put on dialysis support for a few days. Her condition was turning critical every day and during the initial few weeks of her treatment, we had thought, she may not make it. But our team fought on, as did Sushma and her family.”
The cost of her treatment inlcuding a six-week stay at the hospital was estimated to be around Rs 12-14 lakhs. But owing to the poor economic condition of the family, the child’s parents were unable to afford the treatment. Sushma’s father who is a priest at the temple is the sole breadwinner for the family. He managed to collect Rs 7 lakh from friends and family. The rest of the amount was raised through a crowd-funding platform.
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“By the third week of treatment, Sushma started showing recovery signs and by six months, she started doing all her chores on her own. However, she still faced a challenge to hold a pencil or a pen for several months due to the severe muscle weakness in her hands. With the help of aggressive physiotherapy, she regained regular movements of the hand and could finally start writing. Today, as she has cleared her exam with an outstanding result, it is an extremely inspiring moment for all of us to witness, how her sheer determination and will power enabled her to continue pursuing her ambition,” adds Dr. Bhattad.
Sushma had been undergoing physiotherapy twice a week and now she says she feels much better. She now has to visit the hospital only once in three months for a routine checkup. Sushma wrote her SSLC exams and secured a distinction with 76 percent marks. Always interested in academics, Sushma says she aspires to become a teacher or a lecturer.
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