Kiran Millwood Hargrave’s book, the Island at the End of Everything, reminded me of my own forgotten, albeit tentative research, about leprosy in Rosebank, Johannesburg. With renewed vigour I revisited my initial thoughts.

About three years ago I stumbled across an elderly man – with the brightest of smiles and impeccable manners, sitting in great discomfort on a bus stop bench: I was startled by the horrendous open sores on his legs and his ghastly swollen feet.

What a revelation when I realised leprosy is still an illness to conquer in modern times. Notably, the World Health Organisation and its international partnerships, with South Africa amongst others, had to rethink their aim to eliminate leprosy worldwide by 2020.

 In biblical times, leprosy was considered a God given curse – a demonic infestation –  as punishment for disobeying God. Miraculously, by the same token, the afflicted were ensured a place in heaven as they have done their purgatory on earth. Interestingly, Rabbis used to treat leprosy (tzaraat) patients since it was deemed a spiritual affliction.

I gleaned from my ad hoc research that although leprosy is no longer a common disease it is still very much misunderstood. Historically it was a catch-all term for a host of diseases like syphilis, elephantiasis, and numerous dermatological ailments like psoriasis and  dermatitis. Unfortunately, sharing similarities – presenting a similar clinical picture –  with other diseases, often mask the underlying symptoms.

Tracing the evolutionary trajectory of leprosy is a daunting undertaking and might explain seemingly contradictory data encountered in literature. However, that should not deter us from  dealing  holistically with this insidious disease and eradicating relentless discrimination. The leprosy mission in Highlands North, Johannesburg, established in 1948 endeavours to do just that.

Leprosy is associated with dirt (environmental pollution and soil seems to act as a reservoir of ‘contagious debris’), poor hygiene, low socio-economic living standards and lack of education. Statistical data verifies this hypothesis noting leprosy is prevalent in regions like Asia, Central America and Africa.

The spread of leprosy is attributed to migrating patterns of humans, due to crusades, colonisation and natural movement. Different strands of leprosy discovered by scientists and archeologists gave rise to India, Africa, the Near East and recently Egypt being considered as possible points of origin.

How the disease is transmitted remains still unclear and sadly adds to popular held phobias.  Scientifically, leprosy, also known as Hansen’s bacillus, is caused by mycobacterium leprae, a bacterium discovered by the Norwegian physician, Dr Gerard-Henrik Armauer Hansen in 1873 and mycobacterium lepromatosis.  Originally considered a hereditary phenomena we now understand it spreads respiratory through the inhalation of infected nasal secretions (droplets), and possible through broken skin, and not sexual transmission, as some would have it.

Humans, nine-banded armadillos, red squirrels, and mangabey monkeys are known hosts of this bacterium, amongst others. We might deem it a zoonatic disease – a transference of bacteria from animals to humans.

The  physical presentation of true leprosy engenders great anxiety and fear. It is an infection that causes skin lesions and nerve damage. In its advanced stages (multibacillary leprosy), disfigurement and wasting away of flesh –  with the possible loss of limb and even sight, resulting in debilitating disabilities.

The disease is sensitive to temperature and hence responsive to heat and cold and reason for emphasis on sunken nose and ear deformities (cooler than other body parts).

Leprosy is a disease of the peripheral nervous system, skin and also effects other parts of the body depending on the severity of the disease. Similar to diabetics, the impairment and damage to  nerve endings that register pain, result in a loss of sensation, and an appropriate reflex response.  This ultimately has dire consequences, and even leave the afflicted at the mercy of gnawing rats.

Leprosy is a slow developing disease which poses a grave problem for those afflicted and/or exposed to it. Whilst we might debate whether or not leprosy is very contagious, or not, we are assured that Multi Drug Therapy is an effective cure. However,  the operative caveat is that leprosy must be  diagnosed in the early stages. But as noted, given the complexity of the disease and its many facets, it is often not diagnosed in time – or worse still – not diagnosed at all. Just as coughing and sneezing can easily be confused with tuberculosis, skin lesions can be mistaken for a variety of other ailments, such as crusted scabies.

Of interest to me is not the macabre tale of leprosy, but the enduring compassion and ingenious response by those working under extraordinary and challenging circumstances presented by leprosy. Millwood Hargrave paints a vivid picture of life on Culion island in the Philippines, the world’s largest leprosy colony from 1906 to 1998. An orphanage was established on Coron island, across the waters from the colony – in plain sight, to segregate the untainted from the unclean. She manages to maintain the dignity of the afflicted, whilst highlighting the gravity of their existence.

Breakthroughs in the treatment of leprosy were often due to the extraordinary efforts of missionary physicians, and ordinary people like Father Damien, a Belgian priest, of Molokai, Hawaii. The late professor Paul W. Brand did exemplary work in India amongst people affected by leprosy. Under his tutelage, amputees were sent home with a kitten to keep opportunistic rats at bay. He famously said the greatest gift he could give his patients are/were the gift of pain…Jack Penn’s book Right to Appear Human about facial burns of military air crews, finds a thematic link with leprosy sufferers in respect of disfigurement and their Right to be treated as Human.

Catholic parishioners, affected by leprosy, had to watch the transfiguration during the eucharistic prayer through a shared leper’s hole, briefly, one at a time, because they were deemed undesirable. The afflicted also had to wear bells to announce their arrival which also served coincidentally to solicit charity. Sadly, larynx damage is not an uncommon occurrence.

 I must mention Spinalonga, known as the island of the living dead – located in the gulf of Elounda, in north-eastern Crete, Greece. It was a leprosy colony from 1903 – 1957. Ironically,  even though the island was considered a strategic geographic fortress, the Germans forces during WWII did not establish a guard-post on the island. Strangely, they did supply the inhabitants with provisions. I found Epaminondas Remountakis’s exile story to the island most inspiring. He was a young law student that founded the Brotherhood of the Sick of Spinolanga, determined to improve the afflicted’s living condition by introducing classical music, a healthy lifestyle and beauty to their everyday existence. It made me reflect on the biblical inspired saying, ‘cleanliness is next to Godliness’ in a new light.

It is interesting to note both “leprosy” and “butterfly” have a shared lexicon root, lepidoptera; referencing scales – scaled butterfly wings and scales of leprosy. One could argue the beauty and the beast share a common origin.

Undoubtedly, leprosy has left an indelible mark on history. All of which makes me wonder whether leprosy is still a notifiable disease and why an effective vaccine has not been developed as yet. Bacillus Calmette-Guerin BCG, a vaccine developed for tuberculosis, provides some measure of protection against contracting leprosy.

Coincidentally, I find it revealing that during Covid, those who refused vaccination and questioned the draconian remedies inflicted, felt they were being treated like lepers. Covid was certainly a lesson in human nature, if there ever was one.

In closing, there is a need to learn from our collective histories. Whereas euphemisms seldom solve problems, I do urge an engagement with difficult topics: laced with compassion and mindfulness. Which brings me back to the old man at the bus stop bench. I’d looked at his feet, in spite of social grants and the generosity of the local community, the needy in Rosebank, lacked shoes and sadly still do…For want of a nail the shoe was lost, just as for the want of a shoe, ills flourish…

A writer based in Johannesburg, South Africa

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