The last Sunday of January marks World Leprosy Day (WLD). This international awareness day is an opportunity to celebrate people who have experienced leprosy, raise awareness of the disease, and call for an end to leprosy-related stigma and discrimination.
This year’s campaign is “United for Dignity”, calling for unity in honoring the dignity of people who have or have experienced leprosy. The campaign honors the lived experiences of individuals who have experienced leprosy by sharing their empowering stories and advocating for mental wellbeing and the right to a dignified life free from disease-related stigma.
Every two minutes someone is diagnosed with leprosy. It causes nerve damage and muscle weakness that can lead to deformities, crippling, blindness, and isolation. Many Americans think leprosy no longer exists, but it still occurs in more than 100 countries worldwide.
According to the American Leprosy Missions:
A germ, or bacteria, called Mycobacterium leprae. It causes an infection that affects the skin, destroys nerves, and can also cause problems in the eyes and nose.
The medical name for leprosy is Hansen’s disease. Norwegian doctor Armauer Hansen was the first to view the bacillus under a microscope in 1873.
No. The bacteria attack nerve endings and destroy the body’s ability to feel pain and injury. Without feeling pain, people injure themselves and the injuries can become infected, resulting in tissue loss. Fingers and toes become shortened and deformed as the cartilage is absorbed into the body. Repeated injury and infection of numb areas in the fingers or toes can cause the bones to shorten. The tissues around them shrink, making them short.
Early signs include spots on the skin that may be slightly red, darker or lighter than normal skin. The spots may also become numb and have lost hair. Often they appear on the arms, legs or back. Sometimes the only sign may be numbness in a finger or toe. If left untreated, hands can become numb and small muscles are paralyzed, leading to curling of the fingers and thumb. When leprosy attacks nerves in the legs, it interrupts communication of sensation in the feet. The feet can then be damaged by untended wounds and infection. If the facial nerve is affected, a person loses the blinking reflex of the eye, which can eventually lead to dryness, ulceration, and blindness. Bacteria entering the mucous lining of the nose can lead to internal damage and scarring which in time causes the nose to collapse. Untreated, leprosy can cause deformity, crippling, and blindness.
Most people will never develop the disease even if they are exposed to the bacteria. Approximately 95% of the world population has a natural immunity to leprosy.
Leprosy can be cured with multidrug therapy (MDT), a combination of three antibiotics: rifampin, clofazimine and dapsone. Treatment can take from six months to a year, sometimes longer. People are no longer contagious after about one week of MDT.
Approximately 5,000 people in the U.S. are cured but suffer from the effects of leprosy and continue to receive care through outpatient clinics and private physicians. Approximately 150 people are diagnosed with leprosy each year in the U.S.
Leprosy can damage the peripheral nerves and nerves in the skin which can lead to:
Patients taking Multi-Drug Therapy do not spread the disease. When a person is placed on medication, most of the bacteria are killed within a few days. Within one week of starting the medicine, there is no risk of spreading the disease to anyone else. It is not necessary to isolate a person with leprosy at any time. Also, it is not transmitted through sexual contact or pregnancy.
In 2002, the American Leprosy Missions began a partnership with the Infectious Disease Research Institute (IDRI) in Seattle, Washington to develop a vaccine for leprosy. An investment of 17 years and more than $6 million has resulted in LepVax: a vaccine that finished Phase 1a clinical safety trials in healthy human volunteers and is headed into Phase 1b/2a among people most at risk. As of November 2021, it is already awaiting regulatory approval for Phase 1b/2a clinical trial in Brazil, after delays due to the COVID-19 pandemic.
Every day, more than 40 girls and boys around the world are diagnosed with leprosy. Many more will miss early detection and diagnosis because of stigma, fear, and lack of medical expertise.
Leprosy persists in the poorest and most marginalized communities around the globe. If left untreated it can cause crippling disabilities. And affected people often face difficult lives of shame and isolation.
Sources:
https://www.leprosy.org/world-leprosy-day/
https://www.who.int/news-room/events/detail/2022/01/30/default-calendar/united-for-dignity-wld-2022
https://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0006622
https://www.nature.com/articles/s41541-018-0050-z