About three years ago, Shiwani burnt her hand. She told her parents that she couldn’t feel any pain. She confessed that her eyelids were not shutting entirely and that she didn’t have any feeling in her feet, either. Shiwani was only 12 years old.
Shiwani’s parents did not know about the signs and symptoms of leprosy. With six children to care for and not a lot of money to spare, they decided to wait and see what might happen. Untreated, leprosy can cause permanent disabilities, blindness, and emotional scars.
Her parents did not realize how serious Shiwani’s condition would become without correct diagnosis and treatment.
Shiwani’s parents eventually took her to village healers. Then, to a government hospital that also misdiagnosed her condition as allergies.
Even though hundreds of thousands of people are diagnosed with leprosy each year, many healthcare practitioners do not learn how to detect it in their initial training. That’s why we partner with health systems to provide training on detecting and diagnosing neglected tropical diseases like leprosy.
WITHOUT THE CURE FOR LEPROSY, HER CONDITION WORSENED WITH EACH PASSING YEAR.
Shiwani needed serious help. Her parents brought her to a different local private hospital. She finally received a diagnosis of leprosy and began taking Multi-drug Therapy, the cure for leprosy.
But soon after treatment began, Shiwani’s body reacted. Lepra reactions are an inflammatory response to the disease and can occur before, during, or even after treatment. It usually happens during therapy, as the medicines boost cell immunity, but the disease continues to fight. The symptoms of a reaction include ulcers, muscle weakness, extreme pain, and nerve damage.
In Shiwani’s case, the reaction affected her nervous system causing her hand fingers to bend in the shape of a claw. The nerve damage caused her finger muscles to be weakened or paralyzed.
COVID-19 BECOMES A WALL
Care was not easy to access. At the time, India was facing its most deadly wave of COVID-19. Many outpatient departments were closed.
The COVID-19 crisis disproportionately impacts people living with neglected tropical diseases like leprosy, who already face barriers to accessing services and care due to poverty and discrimination.
Desperate, Shiwani’s family sent a photo to a private hospital that referred Shiwani to our partner, The Leprosy Mission Hospital Naini.
SHIWANI FINALLY GETS THE HELP SHE NEEDS
With the help of Canadians, Shiwani received reconstructive surgery for the nerve and tendon damage in her hand. She is doing better now, but the road is long for her recovery. With post-surgery rehabilitation, she will regain the use of this vital body part.
EARLY DETECTION IS KEY
Shiwani’s story illustrates the challenges posed by lack of awareness that leads to a late leprosy diagnosis. That’s why Effect Hope works with partners and communities to increase awareness of the early signs of neglected tropical diseases like leprosy. We also fight discrimination and stigma. Intolerance can cause many people to remain in the shadows, fearing that they will lose their livelihood or educational opportunities.