So unless you work for TLM, you probably don't know an awful lot about leprosy. Neither did I. After 7 weeks here I am finally going to educate you!
1. Leprosy still exists.
You probably do know this, but I'd like to re-enforce the point. The World Health Organisation stated a few years ago that leprosy had been eliminated from India. So how is it that every day this hospital diagnoses several new patients? "Eliminated" is a term used when the prevalence of disease in a population is less than 1 in 10,000. This may well be the case over the whole of India but within the region of Uttar Pradesh it is not.
2. Leprosy is curable.
Dapsone was introduced in the 1950s which helped to control the disease to some extend, but it wasn't until the 1980s that multi-drug therapy (MDT) was introduced. It combined dapsone with other drugs such as rifampcin and clofazimine. It's taken for a minimum of 6 months, depending on the type of disease and after completion of the course the person is cured.
3. It is not very contagious.
It's classed as a communicable disease but the chances of me or any other member of staff catching leprosy is extremely rare. It's transmitted by droplets in the air but a strong immune system can fight it off fairly easily, and over 90% of the population are naturally immune. This means that the majority of people have had prolonged contact with a family or friend with the disease and they are usually from poor backgrounds. After taking just 1 month of MDT that person is no longer contagious.
4. Some people see it as a curse.
Stemming back thousands of years societies have shunned people with leprosy. Here I have met a man who decided that his disease must be a punishment of some kind from God. He left his family and has spent the past 15 years of his life in a monastery serving penance, as he feels that he must have wronged God. I have also met a man who was left here by his children. They told him that they would collect him in 2 days, yet they didn't return. Lastly I met a girl younger than myself who will never be able to marry anyone in her village because they believe that she is cursed. "If she marries at all, her husband will likely be a cripple."
5 It affects the nerves.
Before my arrival here I thought that leprosy was purely a skin disease. It isn't. It causes nerve thickening and can have effects on the motor, sensory or autonomic functions. This causes loss of sensation over the hands and feet, loss of sweating leading to dry skin, and deformities.
6. It can cause permanent deformities.
Following on from the above, the disease can cause 'absorption' of fingers and toes. These can't be grown back again. It can also lead to a clawed hand, making daily functions very difficult. It can cause a foot drop. These can be treated with reconstructive surgery, requiring persistent physio care.
7. It can result in horrific ulcers.
Due to a sensory loss on the feet, people with leprosy don't notice that stone inside their sandal, or that nail that they stood on when walking barefoot. The skin becomes damaged but they don't realise it - how often do YOU look closely at the bottom of your feet? This worsens and develops into an ulcer. I don't mean a teeny little ulcer, I mean a big three-quarters-of-your-foot ulcer in some cases. Some of the worst ones have maggots crawling in them after flies have laid their eggs in them. Ew. Diabetic ulcers in the UK will be nothing compared to what I have seen here. Ulcers take a very long time to heal and are difficult to treat, requiring dressing changes twice a day by the dedicated nursing team. One ulcer patient has been here for over 390 days.
8. A patient can become acutely unwell due to one of two types of reactions.
A reaction can occur before, during or after treatment and will involve a flare up of symptoms. They can cause nerve or nodule pain, and damage to the peripheral nerves as well as those related to the eye. Treatment needs to be prompt and aggressive often with immunosuppressant steroids and sometimes with thalidomide, in which case the patient will have to stay in the hospital for about 4 months.
9. There are 14 patients who live here full-time.
They're called Snehalaya ('mercy home')patients, and most of them have lived here for the majority of their lives, moving in decades ago. Thrown out by their families because they had leprosy, they had nowhere to go and so the hospital took them in and looks after them to this day. What is just an outpatient department for most is a home to these 14 and without Snehalaya they would have been destined to a life of begging.
10. In India, you can divorce someone because they have leprosy.
In the Special Marriage Act of 1954 (before the dawn of MDT) it is stated that if your wife is has leprosy, this is suitable grounds for divorce because the disease is "incurable". The law hasn't been changed. Similar laws mean that a patient with leprosy cannot board a train or hold a driving licence.
1. Leprosy still exists.
You probably do know this, but I'd like to re-enforce the point. The World Health Organisation stated a few years ago that leprosy had been eliminated from India. So how is it that every day this hospital diagnoses several new patients? "Eliminated" is a term used when the prevalence of disease in a population is less than 1 in 10,000. This may well be the case over the whole of India but within the region of Uttar Pradesh it is not.
2. Leprosy is curable.
Dapsone was introduced in the 1950s which helped to control the disease to some extend, but it wasn't until the 1980s that multi-drug therapy (MDT) was introduced. It combined dapsone with other drugs such as rifampcin and clofazimine. It's taken for a minimum of 6 months, depending on the type of disease and after completion of the course the person is cured.
3. It is not very contagious.
It's classed as a communicable disease but the chances of me or any other member of staff catching leprosy is extremely rare. It's transmitted by droplets in the air but a strong immune system can fight it off fairly easily, and over 90% of the population are naturally immune. This means that the majority of people have had prolonged contact with a family or friend with the disease and they are usually from poor backgrounds. After taking just 1 month of MDT that person is no longer contagious.
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| Male Ulcer Ward 1 of 2 |
Stemming back thousands of years societies have shunned people with leprosy. Here I have met a man who decided that his disease must be a punishment of some kind from God. He left his family and has spent the past 15 years of his life in a monastery serving penance, as he feels that he must have wronged God. I have also met a man who was left here by his children. They told him that they would collect him in 2 days, yet they didn't return. Lastly I met a girl younger than myself who will never be able to marry anyone in her village because they believe that she is cursed. "If she marries at all, her husband will likely be a cripple."
5 It affects the nerves.
Before my arrival here I thought that leprosy was purely a skin disease. It isn't. It causes nerve thickening and can have effects on the motor, sensory or autonomic functions. This causes loss of sensation over the hands and feet, loss of sweating leading to dry skin, and deformities.
6. It can cause permanent deformities.
Following on from the above, the disease can cause 'absorption' of fingers and toes. These can't be grown back again. It can also lead to a clawed hand, making daily functions very difficult. It can cause a foot drop. These can be treated with reconstructive surgery, requiring persistent physio care.
 |
| Loss of toes: a patient in the female ulcer ward |
Due to a sensory loss on the feet, people with leprosy don't notice that stone inside their sandal, or that nail that they stood on when walking barefoot. The skin becomes damaged but they don't realise it - how often do YOU look closely at the bottom of your feet? This worsens and develops into an ulcer. I don't mean a teeny little ulcer, I mean a big three-quarters-of-your-foot ulcer in some cases. Some of the worst ones have maggots crawling in them after flies have laid their eggs in them. Ew. Diabetic ulcers in the UK will be nothing compared to what I have seen here. Ulcers take a very long time to heal and are difficult to treat, requiring dressing changes twice a day by the dedicated nursing team. One ulcer patient has been here for over 390 days.
8. A patient can become acutely unwell due to one of two types of reactions.
A reaction can occur before, during or after treatment and will involve a flare up of symptoms. They can cause nerve or nodule pain, and damage to the peripheral nerves as well as those related to the eye. Treatment needs to be prompt and aggressive often with immunosuppressant steroids and sometimes with thalidomide, in which case the patient will have to stay in the hospital for about 4 months.
9. There are 14 patients who live here full-time.
They're called Snehalaya ('mercy home')patients, and most of them have lived here for the majority of their lives, moving in decades ago. Thrown out by their families because they had leprosy, they had nowhere to go and so the hospital took them in and looks after them to this day. What is just an outpatient department for most is a home to these 14 and without Snehalaya they would have been destined to a life of begging.
10. In India, you can divorce someone because they have leprosy.
In the Special Marriage Act of 1954 (before the dawn of MDT) it is stated that if your wife is has leprosy, this is suitable grounds for divorce because the disease is "incurable". The law hasn't been changed. Similar laws mean that a patient with leprosy cannot board a train or hold a driving licence.
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| Point 11? It can affect any age. Teenage surgical patients. |
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