Jyoti is a thalassemia patient. But, she says, she is more than an illness—she believes in her identity as a novelist, a blogger, a speaker, and a woman.
Jyoti’s childhood was different in many ways. She remembers reading books under a small lamp while her sisters slept. She also remembers going for regular blood transfusion while her friends went to school.
Jyoti Arora was three months old when she was detected with thalassemia, which was long before she understood the full meaning of her ailment. Her parents, though shell shocked, wanted Jyoti to have a happy and fulfilling childhood.
They sent her to the same school that all the neighbourhood children went to. Her school was disrupted often, and for days together, when she had to be admitted to the hospital.
This continued for a few years and when Jyoti was in Class 7, she had to drop out of school. This was a huge setback. But Jyoti was not going to let her illness win over her. She not only completed her school through correspondence but also got a Master’s in English and Applied Psychology.
Jyoti loved reading. Books were her best friends and she devoured every genre; she would submerge herself in classics that were written hundreds of years ago. She would dream about stories, about writing stories, about other children reading her stories. While thalassemia stunted her growth and regular blood transfusions increased the iron content in her body, what did not change was her love for books. She started nurturing a dream, a dream to write her own book.
Jyoti started her professional career as an English tutor, while simultaneously writing articles for a couple of magazines. After that, she worked for a few years as a freelance writer and content developer. Her primary role was to abridge classics and make them suitable for pre-teens to read. She also wrote fiction/adventure books for children. After working in the freelancing space, Jyoti took up full time employment with a US-based recruitment firm where she was awarded the best employee of the year award for 2014.
The battle with thalassemia continued. However, there was no stopping Jyoti. She was convinced that her soul lies in writing and her first novel — Dream’s Sake — was published in the year 2011.
The novel is based on the psychological conflict of physically challenged people. She went on to self-publish her second novel — Lemon Girl — in the year 2014. The theme of Lemon Girl is women’s abuse and oppression. Both her novels have garnered positive reviews from readers as well as critics. While her love for reading and writing is second to none, she is fascinated by technology too, and writes about various gadgets and products at www.technotreats.com.
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Jyoti’s undefeatable grit and go-getter attitude have won her many laurels. She was recently invited to be a speaker at an event on World Thalassemia Day on May 8, 2015, which incidentally is also her birth date.
Jyoti used that platform as an opportunity to talk about thalassemia, and today advocates awareness about thalassemia on various other forums.
Jyoti feels that even today, awareness about thalassemia and its prevention is minimal. Thalassemia is a genetically inherited disease, is not infectious, and cannot be passed on from one individual to another through personal or any other contact. In India, about 3.9 percent of people are carriers. Thalassemia Major patients require life long blood transfusions and costly medicines for their survival. Often, the blood transfusion needs to be carried out on monthly or even fortnightly basis.
Apart from regular blood transfusions and costly medicines, thalassemia patients are also given Desferal injections that need to be infused over a period of several hours. This means that the patient has to keep the injection and the infusion pump attached to the body over a period of ten-twelve hours, several days a week. The only treatment available for this disease is a bone marrow transplant, which is very expensive and risky.
While the treatment of thalassemia can get complicated and expensive, the best solution is to prevent the occurrence of the disease. In fact, a child can be Thalassemia Major only when both parents are Thalassemia Minors. The probability of the child being a Thalassemia Major in such a case is 25 percent and can be detected during the early stages of pregnancy.
Jyoti feels that society at large needs to accept and assimilate people like her in the mainstream. She is not sick or feeble or unintelligent just because she is a thalassemia patient. She, in fact, advocates the importance of considering herself equal to one and all. Jyoti feels that she is more than an illness—she believes in her identity as a novelist, a blogger and a woman.
For more information, write to Jyoti at: firstname.lastname@example.org