Leprosy is often considered a disease of the past. Most probably, this notion stems from the fact that many of us heard about leprosy for the first time through readings from the Bible, in which it is mentioned more than 40 times.
Leprosy, in fact, continues to affect millions of people around the world, with hundreds of thousands of new diagnoses every year, while it is known that many continue to be undiagnosed.
Leprosy is a mildly infectious disease caused by a bacillus called Mycobacterium leprae (a relative of TB). It is also known as Hansen’s disease, after the scientist who discovered M. leprae in 1873.
Outbreaks of leprosy have affected, and panicked, people on every continent. The oldest civilisations of China, Egypt and India feared leprosy because they considered it to be an incurable, mutilating and contagious disease. It is most common in places of poverty – overcrowding and poor nutrition mean people’s immune systems are not strong and they are less able to fight the disease.
Although for thousands of years people with leprosy have been stigmatised and, till this very day, in some countries they are even banished from their respective communities largely due to myths and superstitions, leprosy is curable, not highly contagious and many people have a natural immunity to it. The disease causes severe disfiguring skin sores and nerve damage in the arms, legs and skin areas around the body.
While in most of the advanced countries the subject of leprosy is mostly mentioned around World Leprosy Day, observed on the last Sunday of January, a jurisdiction of the Military and Hospitaller Order of St Lazarus of Jerusalem, based in Malta, made it its ongoing mission for the last 46 years to fund charities assisting hundreds of lepers in both India and Uganda. Its continuing support throughout the years has significantly improved the lives and alleviated the sufferings of hundreds of lepers.
The members of the Grand Commandery of the Castello, based at Castello Lanzun in San Ġwann, have been assisting two main charitable organisations: Women in Need (WIN), a UK charity operating in Nagpur, India, and Kagando Hospital in Uganda.
According to the WHO, India accounts for the majority of new cases of leprosy each year. The stoppage of active surveillance after reaching elimination levels earlier this century is beginning to haunt India, which now accounts for 60 per cent of the world’s new leprosy cases, says the WHO.
WIN founder Leah Sha Pattison, who earlier this month was honoured with an MBE by Queen Elizabeth II for her services and support to lepers in India, said: “I often wonder what it must be like to experience discrimination, abuse, rape, a terminal illness, confusion, fear and pain, and to do so without the comfort of another person being there to lend a helping hand, offer a solution or simply provide a sympathetic ear. It is a question that constantly bothers me as I meet so many ladies through Women In Need, bearing such tales of misery and loneliness.
Leprosy is curable, not highly contagious and many people have a natural immunity to it
“It’s hard not to be moved by their circumstances or to be in awe of their strength and tolerance in the face of such adversity. While I contracted leprosy back in 1997 and experienced the disease first hand, my family did not abandon me, many miles away in the UK. It was Usha who first spotted my early symptoms and supported me through the ordeal, and it was during that time we both realised we shared a common goal – to help those ostracised because of leprosy and to give them back their self-respect and dignity. I was treated and cured within a year; it was at that point Usha and I set out on our mission.”
WIN co-founder Usha Chandrabhan Patil said: “When I was a child, I developed a severe form of leprosy along with bouts of Type-2 Lepra reaction, causing extreme nerve pain and an intolerance to the drugs I was taking. This conflict between controlling the allergic reaction and leprosy continued on and off for three years, during which time I was frequently hospitalised. With the help of a leprosy specialist, my condition was eventually controlled and I was able to resume my education. I did so while staying at Dattapur Leprosy colony in central India, where Leah and I first met.
“At the age of 10, leprosy took my childhood and I remained a sufferer for six years, living within the colony for eight. Some 300 inmates became my friends and I remember vividly their stories of heartache and betrayal by their loved ones. Leprosy robbed many of them of their homes, families and dignity and I too wondered what the future held in store for me, even though I was fortunate to have the continued love and support of my own family,” Patil adds.
“I decided that leprosy was not going to rob me of my freedom and the right to control my own destiny. I knew my future lay in empowering other female sufferers, so many of whom were abandoned by husbands and denied access to their children because of a common, treatable disease. Whatever I suffered has made me stronger and more capable of feeling compassion towards the women Leah and I strive to help. Corrective facial surgery helped me to be accepted within mainstream society and to leave leprosy behind, but there are so many women for whom surgery is not an option, whose deformities have led to a lifetime of discrimination and abuse,” Patil explains.
Pattison says: “For the past eight years WIN has been the recipient of support from the Grand Commandery of the Castello. Donations raised have gone towards a mobile primary health clinic in Nagpur’s urban slums; a small hospice for elderly leprosy patients in Wardha; beds and equipment for abandoned women sheltered by WIN; the creation of a garden for abandoned women; as well as capital equipment such as computers, projectors, screens, water filters and office furniture.”
Through the Grand Commandery’s latest donation of £7,800 generated via its first crowdfunding among its members, WIN was able to purchase an iBreast Exam.
The iBE is enabling the charity to provide breast cancer screening in remote villages in Wardha District, where leprosy is a constant reality and where currently only six per cent of underprivileged Indian women know about breast cancer and fewer still have access to screening. With 2,000 cases detected every day in India, this device is instrumental in saving lives.
Every year, the Grand Commandery’s Hospitaller, Paul Warren, travels to India and Uganda to monitor the progress being made and to assess the future needs on the ground.
He says: “We deal directly with local charities, where we are able to visit, see and monitor the results first hand. We go straight where the need of the lepers is because through our funds we can do more for some of the poorest of the poor.”
In 2017, the Grand Commandery began a partnership with Kagando Hospital run by the Anglican Church of Uganda. Through the intervention of a retired Maltese nurse, Rita Miller, who every year helps in the hospital, it was decided to build two units as accommodation for visiting medical staff and young graduates, who are also being trained in assisting lepers.
In its mission to relieve some the continuous suffering of lepers and victims of disease and poverty, the Grand Commandery is now funding a project for the refurbishment of the operating theatre at Kagando Hospital.
For more information, visit grandcommanderymalta.org or contact the Chancellor via email: firstname.lastname@example.org.
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