At the age of just 13, Poonam began to notice dark patches of skin on the side of her neck. The patches soon spread to her hand. She found it harder to pick up her pencil and other everyday objects, as well as to carry things.
Poonam, who lives in a rural village in Madhya Pradesh, central India, was developing a clawed hand. She was worried: "I didn't understand why I was getting injuries on my hand," she says. One year after her symptoms began she received a diagnosis. Poonam had leprosy.
It is hard to believe that in the 21st century Poonam is one of many thousands of children who are newly diagnosed with leprosy each year. In 2015, World Health Organization (WHO) data recorded a total of 18,796 new child cases - that's around 52 children each day.
Every half an hour, another child is diagnosed with leprosy.
That same year, 210 758 new cases of leprosy were reported from 106 countries. This means nine out of every hundred people newly diagnosed are children under 16 years old. Experts have identified 22 priority countries worldwide where 96% of all new leprosy patients are reported; the majority (81%) of these are in India, Indonesia and Brazil.
Worryingly, the WHO data show the number of people newly diagnosed with existing impairments is increasing. This points to late diagnosis, a lack of awareness of the early signs of leprosy and national healthcare systems struggling to recognise and treat leprosy.
Yet leprosy is fully curable, and if caught early, treatment can prevent impairments and disabilities from developing. It is when left undetected for long periods that the disease can cause irreversible and lifelong damage to eyes, hands and feet.
Promptly after her diagnosis, Poonam started a course of multidrug therapy (MDT) treatment and was sent to the Vadala Mission hospital for reconstructive surgery on her hand. MDT treatment is provided free of charge around the world by Novartis Pharma, and distributed by the WHO, so unlike many diseases, the cost of drugs is not a barrier to treatment.
The Vadala Mission hospital also sent a field health worker to check Poonam's family members, an important step in leprosy control programmes, and her mother was identified as having leprosy.
Although leprosy is a lot less infectious than the common cold, it can sometimes spread through households if untreated. The disease is caused by a slow-growing bacillus, Mycobacterium leprae, which is transmitted by droplets from the nose and mouth during close and frequent contact with untreated people. (Once someone has had their first dose of MDT they are no longer infectious.) The incubation period of the disease is about five years and symptoms can take 20 years or even longer to appear.
Significantly, given the proportion of children being diagnosed, it is clear the disease is still being transmitted through communities. Its detection cannot be explained by long incubation periods.
Manjit, also from Madhya Pradesh in India, was just nine years old when he came to the Leprosy Mission's Naini Hospital with multiple injuries caused by leprosy. He had dropped out of school and would shut himself up in the house to avoid the negative attention from other kids and teachers. After being treated for the disease, he received up to eight reconstructive surgeries, as well as physiotherapy sessions, to regain the shape and use of his hands and foot. The impact of the treatment was profound for Manjit: he was able to resume his studies at school and play cricket with friends.
Even today, discrimination and stigma are common experiences for many people with leprosy. This was an aspect Mahatma Gandhi particularly recognized, so he worked tirelessly to help those affected by leprosy. World Leprosy Day is commemorated on the last Sunday in January each year to coincide with the anniversary of his death on 30 January 1948.
This World Leprosy Day, observed on Sunday 29 January, the International Federation of Anti-Leprosy Associations, ILEP, is calling for special action to prevent boys and girls from developing lifelong disabilities associated with leprosy.
We want to see more active detection and early diagnosis, which are crucial if we are to achieve the WHO global target of zero disabilities in girls and boys. We specifically need to focus our efforts highly endemic countries and highly endemic pockets within countries.
Poonam's journey could've been very different, had the disease not been detected and the impairments worsened. Instead, her story demonstrates the importance of intervention and treatment to people's quality of life. Poonam is now married to a supportive husband. No visible signs of her leprosy remain, and she is happy and optimistic about the future.
Every child has the right to experience a full and happy life, free from the physical impairments and stigma of leprosy.
To learn more about ILEP's campaign to achieve zero transmission, zero disabilities and zero discrimination for people affected by leprosy, visit www.triplezerocampaign.org.Suggest a correction