St Francis Leprosy Guild
At Wishy, we want to understand more about what charities can offer and how we and the public can support them. We sat down with Claire at St Francis Leprosy Guild to find out more about how they can offer positive support and life changing care to people who are vulnerable to and are diagnosed with leprosy.
What is Leprosy?
Leprosy is known as Hansen’s disease and is caused by the Mycobacterium leprae bacteria. Leprosy can affect anyone, at any age but it is linked to poverty, malnutrition, and genetic susceptibility and is most likely to be contagious to people with depleted immune systems. It is a progressive disease. It can start out as a small rash which is hard to diagnose as it is easily misdiagnosed as other skin complaints like eczema. If left undiagnosed leprosy attacks nerve endings, destroying the ability to feel pain and injury. This lack of sensation makes patients susceptible to ulcers and infections. Over time, if left untreated, these ulcers can lead to the loss of fingers, hands, toes, and feet. Even those treated for leprosy and who are no longer infectious, can still develop ulcers over their lifetime. Leprosy can also cause blindness, facial disfigurement and the clawing of hands and feet. From the mid-1980s it has been successfully treated with multidrug therapy of generic drugs daspone, rifampicin and clofazimine.
Although a cure for leprosy is readily available, if left untreated, leprosy can cause visible disability and disfigurement. As a result, many people fear the disease and many leprosy-affected people (including their families and children) are subjected to stigma and discrimination.
In addition, outdated laws mean that people with leprosy can be forcibly pushed out of their homes, livelihoods, and places of work. In some parts of the world, leprosy is grounds for divorce. Due to this terrible injustice, people with leprosy may not come forwards for medical treatment, putting themselves, their families, and communities at greater risk.
Who are St Francis Leprosy Guild?
Historically, SFLG started out as a Fundraiser for supplies like beds, clothing, medical supplies etc but over time the strategy changed because in the 80s a cure was developed so now the focus is to eradicate leprosy completely. To say that a disease has been eradicated it must be Less than 1 in 10,000 to have it to officially irradicate it but in some countries that is still a lot so although officially eradicated, the reality is there are 200,000 cases per year and possibly 4mill could have leprosy and not know it.
Why was St Francis Leprosy Guild created?
St Francis Leprosy Guild was founded in 1895, by an Englishwoman, Kate Marsden. Her mission in life was to address the needs of people with leprosy who were outcast and abandoned by society. Kate was born in north London on 13 May 1859 to ordinary, middle class parents. As a young woman, she heard reports from the missionary, Father Damien, that people with leprosy were forcefully quarantined on the Island of Molokai. Inspired to help, Kate trained as a nurse at the Evangelical Hospital School of Nursing. This was at a time when nursing was a still a novel profession, especially for women. After she qualified in 1877, the Red Cross sent Kate to nurse soldiers fighting in the Russo-Turkish war. It was during her time in Constantinople that she first encountered outcast, abandoned, leprosy patients.
Upon her return, Kate resumed nursing and, after the much-publicised death of Father Damien in 1889, her interest in helping leprosy-abandoned people was reignited.
Kate sought the patronage of Queen Victoria, who gave her a letter of introduction to the Imperial Russian court. There, she was befriended by the Dowager Empress Maria Feodorovna and Princess Eugeniya Shakhovskoy. Both were interested in establishing professional nursing in Russia and were sympathetic to Kate’s cause.
While travelling through Siberia and Yakutia, Kate encountered more suffering from the devastating effects of leprosy. Those experiences were to determine her future. For the rest of her life, she sought to engage others in the plight of people affected by leprosy.
Shortly after her return from Russia, Kate converted to Catholicism and became a Franciscan tertiary. In 1895, with the help of influential Catholics, she established St Francis Leprosy Guild. Its patron was the Archbishop of Westminster, Cardinal Vaughan (1832-1903). the work of St Francis Leprosy Guild has continued to this day.
How do St Francis Leprosy Guild help people with Leprosy?
SFLG has a 5-prong strategy called ‘TRACE’:
T = Training – teaching and training medics to recognise early signs because that skill can be lost
R= Research-projects to build an app for leprosy identification and keep notes on who screened and when and sectoral screening to see if that can help diagnose in the field.
A= Active case finding – where we go out and find cases
C = Care – so that is running hospitals for people with leprosy and ongoing care for the effects of leprosy such as blindness and disability – long term care, rehabilitate and make self-sufficient again as cannot return to society.
E = Emergency – responding to emergencies in countries and giving aid particularly as they are physically and economically vulnerable. Specific emergencies include natural disasters and now covid-19.
In the developed world there are not many cases of leprosy, In UK it is only 2 cases a year. In countries like India Indonesia, Brazil and Africa the levels are a lot higher and this is where people need our help. The problem is that whenever elimination is reached (1 in 10,000 people) , the training has stopped however the disease still affects people lives. The st francis leprosy guild are trying to fight these active case by going door to door or hosting stalls in villages.
How has St Francis Leprosy Guild grown?
The Charity has existed for 125years. This is an anniversary year ending in October 2021. (Est. October 1895) We are supporting 37 projects in 13 countries. I think Kate would be very pleased with that.
What does the future look like for St Francis Leprosy Guild and how can we help?
With help we want to completely eradicate leprosy for good but to do that we need more awareness and support. Generally, supporters are older as this is such a long-term charity. We hope that by working with Wishy it will be a nice way to bring information on leprosy to younger people and with the use of modern technology we can make a dialogue between the public and the charity.