Busting the Leprosy Myth – Body parts don’t fall off

WARNING Leprosy is not a pretty disease and this blog post contains images that some people may not want to view.

Lalgadh Leprosy Self Care Training UnitMention leprosy to large chunks of the worlds population and many of them will hold the belief that it is an extinct disease, something talked about in the Bible and a disease to be feared because it caused deformity and disfigurement where fingers and toes often “fell off”.
Since I have been away over the last two months visiting Lalgadh Leprosy Hospital and Community Service Centre, even some of my very educated friends have made jokes about that very thing happening to me!

World Leprosy Day

Every year World Leprosy Day falls on the last Sunday of January. This is an opportunity for those involved in the support and treatment of leprosy affected people, to raise awareness & understanding of the disease. 

So with World Leprosy Day 2018 fast approaching and my long standing relationship with Nepal Leprosy Trust & Lalgadh Leprosy Hospital, I thought I would do my bit and take this opportunity to dispel the myth, that if you have leprosy, “bits fall off”.
*Please note at the outset that this is not intended to be a detailed medical paper taking a complete look at the pathology of leprosy, but is just my way of hopefully educating a few more people about the reality of life with leprosy.

The Initial Presentation of Leprosy

Leprosy (AKA Hansen’s Disease) is caused when a person becomes infected with the Mycobacterium leprae or Mycobacterium lepromatosis bacteria. Whilst some patients present with violent skin reactions (shown in the image), for many the initial symptoms can be pretty much non existent or just small skin patches that are often misdiagnosed as a fungal infection like Ringworm. This variation in presentation is down to the intensity of the immune reaction of the affected persons own immune system to the bacteria.

Low grade reactions can mean that many patients go undiagnosed, often for years and this is generally where the most severe problems occur.

The bacteria takes up residence inside the patients skin, peripheral nerves, nasal mucosa and ocular nerves. Interestingly the resulting pathology & deformity are dictated by the reaction of the patients own immune system. The longer or more intense the body’s immune reaction to the disease the more likely that neuropathy (loss of sensation), destruction of cartilage and deformity are to occur.
So with leprosy early detection and treatment is essential in order to prevent long term complications & deformity. This can be difficult if the initial symptoms are vague, the healthcare professional is not trained to recognise these subtle signs or the patients are reluctant to come forward, for fear of stigmatisation in their local community, although thankfully, through active education programmes, this social stigma is reducing.

Treatment for Leprosy

Following infection by the bacteria, there is a window of 6 months in which the patient needs to be properly diagnosed & provided with the appropriate drug therapy. If this happens there is every chance that any complications can be reversed and they can go on to live a normal life free from deformity & disability.

Patients are usually require to take the multi drug therapy from between 6 months to two years. This length of treatment and the fact that the drugs do have some quite severe side effects, means that some patients do not complete the course of treatment and may end up with secondary deformity and disability as a consequence.

Throughout the world all drug therapy for leprosy is provided free of charge by the World Health Organisation so even the poorest of patients can receive the full treatment that they require to either make a full recovery or to limit the impact the infection can have on their body & their life.

So How Does Deformity Occur?

All of the deformity that you see in leprosy patients are secondary complications and not directly caused by the bacteria. There are a number of different ways leprosy can cause deformity and disability. This is just a quick overview.

 

Cartilage Destruction
In some patients the bacteria in the nasal mucosa cause such a large immune reaction that the cartilage itself becomes degraded and collapses.

Nerve Damage
Leprosy starts out by affecting the small nerves in the skin’s surface, but if as I have already discussed if it is left untreated, the larger nerves in the elbow, wrist, knee and ankle can become affected. This nerve damage can result in loss of sensation & muscle paralysis.

Loss of Sensation

Nerve damage commonly results in the loss of sensation in the peripheral nerves of patients hands & feet. This makes the hands and feet very vulnerable to traumatic injury, often caused by burning, as many people in the poorer communities affected by leprosy, cook on wood fuelled cookers, and pressure in the feet from standing and walking. 
These injuries can often go undetected on the bottom of the feet or ignored because of the lack of pain. When this happens there is a high risk that these open wounds will become infected and again because of the lack of pain or the worry of the potential cost of treatment, these wounds are often neglected. As a result underlying bone can become affected. Once this happens there is the requirement for some degree of amputation of the digit or bones affected. This is where leprosy gets it’s reputation for body parts falling off. 

Muscle Paralysis

Lagophthalmos – if the patients opthamic nerves become affected by the leprosy bacteria they can develop this condition, where they have the inability to close their eyes. This leaves them very vulnerable to secondary eye infections or injury to the delicate structures in the eye.

Foot drop – when the lateral popliteal nerve (behind the knee) is affected, patients loose the ability to lift the front of their foot and so it causes tripping & dragging of the foot which often results in injury to the toes.

Clawed hands – the fingers become clawed and rigid and the patients loose the function of their fingers. This rigidity & clawing can make undertaking manual tasks very difficult and can really impact on the patients ability to earn a living or look after themselves. Fortunately this deformity can often be treated with tendon transfer surgery quite successfully. 

 

So there you have it a quick overview of leprosy & a bit of mythbusting as my contribution to World Leprosy Day 2018. Hopefully you found this interesting and it has helped you understand the condition of leprosy and it’s secondary complications a bit better.

So the next time someone jokes about having leprosy & bits falling off, you can very definitely put them right.

Jill Woods - Leprosy Learning in Southern Nepal

Having just returned from two months out in southern Nepal supporting the work of Lalgadh Leprosy Hospital & Community Service Centre, the reality of the lives of people living with the affects of leprosy is all too fresh in my mind. There is so much work required to get these people living in conditions close to something we would vaguely class as normal.

This photo was taken as we were visiting a small village where a large number of the families are affected by leprosy. They live in very very basic conditions. Forty two houses share one toilet between them. That isn’t a typo, that is the reality of these peoples lives. The only running water in the village are two hand pumps. Many of the one room mud & straw houses have no doors or windows, which when the temperature is dropping to zero at night is hard to imagine.

SOBERING

If this blog post has interested you & you feel at all moved to do something to help these people, I have a Just Giving page set up raising money to support the work being done by the dedicated & very passionate staff at Lalgadh in support of these very poor and marginalised people.

Read more about my Lalgadh story and make a donation here.

Many thanks for taking the time to stop by my health practice marketing blog today. Please share your thoughts & feelings in the box at the end of this page. I’d love to hear from you.

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Until next time

Thank you

Jill signature with kiss

 

 

 

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