KATHMANDU, JULY 5
Jyoti Budhathoki's, ordeal of visiting hospitals to save her life started 17 years ago when she was four years old after some bone related complication in her right foot's little toe was noticed.
At the age of five, doctors at a hospital in Kathmandu decided to cut off her little toe after identifying the medical condition that was spreading in her legs. But, it did not help, rather she started experiencing 'unbearable pain'.
Years after undergoing several medical check-ups and medications, doctors at Dhulikhel Hospital were able to diagnose the disease. Jyoti was suffering from a very rare, degenerative and incurable disease called systemic sclerosis. The disease is a condition where one's immunity system, which is required to fight diseases and viruses gets confused and starts attacking the body's own defence mechanism. Upon being infected with the disease, patients continuously become weak as all body parts start getting infected systematically in a constant manner.
Jyoti, now 21, has been confined to the bed in Room No 6 of Orthopaedic Ward of Dulikhel Hospital for the last five months. She lies motionless on the bed due to the heavy dose of painkillers. Her right feet has been amputated below the knee to stop the infection from spreading.
Dr Sabik Raj Kayastha, orthopaedic surgeon involved in her treatment, said the diseases has now started attacking her spinal cord. The doctor also said that the disease has started affecting her heart.
Jyoti is from a decent family from Ramechhap. Her father earns just enough for the five-member family. In these years, Jyoti's father has already spent above Rs five million on her treatment. Her two younger brothers, who are planning higher studies, are struggling to get admission in colleges in Kathmandu, while the family is struggling to pay off the loan they had taken for her treatment.
The family has to pay due amount of Rs 500,000 to the hospital. She has to regularly visit the hospital every month for immuno-suppressive drugs and steroids. This requires a lot of testing on a regular basis and is generally a very expensive process. Systemic sclerosis is an autoimmune condition that requires lifelong care, treatment and medication. The disease can attack all body organs.
Jyoti, a student of media studies at the School of Arts in Kathmandu University, often gets support from different people who come to know about her pain. "People have been kind towards me all the time and provide me support, which I can't refuse due to my circumstances," Jyoti told THT.
Despite uncertain future, Jyoti seems to be optimistic about pursuing her dream and leading a successful life.
"I know the disease is incurable, but if I get proper medical attention and long term treatment, I could lead a normal life as the disease I am suffering from is manageable," Jyoti said.
Similarly Dr Kayastha said, "The disease can be controlled and she can lead a normal life to some extent."
Some philanthropists and well-wisher have extended support to Jyoti in various ways.
A Non-government Organisation that wants to remain anonymous, has been supporting Jyoti for long. "But, our support seems very minimal, as we think collective effort from people can drastically change the life of Jyoti in no time," said an official of the organisation.
A fund raiser is being held to help Jyoti financially. To support her one can deposit money in her NMB Bank account 0210012353600012. People can also reach Jyoti through her mobile phone No 9864018343.
A version of this article appears in the print on July 6, 2022, of The Himalayan Times.
