In the 1959 Hollywood epic Ben Hur, the final act found the titular character seeking out his family and breaking down after realizing that his mother and sister had been banished away from society and isolated after contracting leprosy. It is a heart-breaking moment that accurately depicts the mindset towards the dreaded disease over 2000 years ago.
The problem is, even today, that mindset has not changed even though we have achieved so much in our fight against leprosy.
With close to 200,000 cases of leprosy reported every year, the present estimate for people living with Hansen's disease stands between 2 to 3 million in the world. And sadly, India accounted for 60% of the total number of new cases as per the Global Leprosy Update 2017. Even though we have reduced the burden of the disease drastically over the last century, elimination is still a far distance away from eradication.
The tragic part is that even after the patient has been completely cured of leprosy after treatment, the discrimination follows them lifelong due to lack of awareness from the general public. This destroys their social life, their educational and job opportunities and even their chances of finding a partner.
All because you are unaware. See the difference? The fault is not theirs. It is you who needs to get your facts right.
So know your leprosy facts. (Source: CDC)
- Leprosy is not easy to catch with over 95 % of adults having sufficient immunity to stop the bacteria.
- Yes, it is a bacteria and not a curse as so many superstitious folk try to imply.
- You cannot get leprosy through casual contact with a patient.
- Leprosy can be cured with the right antibiotics.
- Early detection and treatment matters. If not done in time, it does cause irreversible damage to organs like the skin, nerves and eyes.
- A person stops being contagious within a few days of starting antibiotic therapy - the key is to ensure the treatment is completed as the process may take up to two years.
How can you help?
Help reduce the stigma. Organizations like Sasakawa-India Leprosy Foundation (S-ILF) run over 268 projects across 214 districts and 18 states of India, aiming to provide socio-economic empowerment for people suffering from leprosy, providing micro-grants and helping them achieve higher education, skill training and work opportunities. For over 65 eager minds like Anita Mahto who watched her mother suffer the stigma of having leprosy, fully paid scholarships to become nurses offer a chance to heal others.
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| The Skills to Employment Program (STEP-UP) aims to provide practical skill training and education that makes the young easily employable and financially independent. Source: SILF |
Youth Festivals are being held on Jan 29th 2019 (January 30 is World Leprosy Day) to get the 'us versus them' mentality out of the way and 'Rising to Dignity' awards presented to people affected by leprosy who have turned the tide and become inspirations.
The mindset change with these efforts is visible in so many individual cases.
As you can see here, there are so many success stories today.For others like Babita Anjare, being born to leprosy afflicted parents who were reduced to begging in Tapovan, Amravati due to their ailment, her fate would have seemed inevitable a generation ago. Instead, when she developed leprosy at 18 years, she took treatment immediately and was completely cured with no deformities. With training and monetary help from S-ILF, she and others like her starting selling saris for a living.
Thanks to the initiatives by Yohei Sasakawa, the chairman of the Nippon Foundation who also happens to be the WHO Goodwill Ambassador for Leprosy Elimination, the Global Appeal to End Stigma and Discrimination Against People Affected by Leprosy is held annually across the world and focuses a light on public misconception and how to overcome it.
Since 2006, the resolute efforts of this Global Appeal have been endorsed by world leaders and Presidents, human rights organizations including Save the Children, leaders of all the major religious faiths, the World Medical Association and hundreds of key national and international associations and universities across the globe.
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| Image Source: SILF |
The reality is that a lot of work is being done to rehabilitate those who have leprosy and successfully reintegrate them back into society. Now, it is up to us to move beyond the 'Ben Hur' depiction of leprosy that is stuck in our minds and open our arms to them too.
That's true. We need to open our hearts to prevent the darkness from continuing
ReplyDeleteThe mindset needs to change, I feel.
DeleteAgree with you though it's fully curable disease still the stigma and discrimination attached with this disease still prevails. That's great initiative by Silf Foundation to give platform to leprosy affected Patients and strength their skills.
ReplyDeleteI agree... it is important raise awareness on this. As doctors, we need to help contribute not just within the hospital but also this way.
DeleteIt’s a great way to spread awareness for Leprosy, that way we could fight the disease and eradicate it to the core. Keep up the good work Dr Roshan
ReplyDeleteThanks Richa... means a lot.
DeleteI have no idea how long we will continue to live in a fairyland with myths and superstitions. Ah, what a timely post, Roshan. Let's hope it reaches the right people and spread awareness on Leprosy.
ReplyDeleteUnfortunately, even educated people still live with these misguided concepts about diseases like leprosy. Important to share facts.
DeleteI am sure you have heard of Baba Amte who began an organisation for the treatment and rehabilitation of leprosy patients in Maharashtra, called, Anandvan. Today, his sons carry on his legacy and have treated and cured many a patient. His contribution towards their rehabilitation and his work towards educating the society towards accepting the patients back into their world got him the Padma Vibhushan.
ReplyDeleteThanks for sharing this post, Roshan. It is time people became aware about diseases and their treatments instead of following regressive ideas and shunning the people who already suffer a lot in life.
I did not know about Anandvan though I knew of Baba Amte. People like that deserve to be national role models.
DeleteThat's such an eye opening post on leprosy. Everything that I have ever heard of related to leprosy is of Baba Amte and the village of leprosy patients he built. There is so much social stigma attached to it that people don't take pains to learn the facts. Thanks for sharing this post, Roshan and making people aware of this disease.
ReplyDeleteGlad to make a difference. If we can educate even one more mind, it would be awesome.
DeleteLeprosy was not an issue in my growing up or adult experience in the United States but I remember quite well the early days after our AIDS epidemic struck. Families hid the fact that a member had the condition, even after they passed away (and for years, it was a death sentence), due to the stigma. A friend I went to high school and college to lost a family member to AIDS, and her friends knew the cause of death, but she was an exception. People must be educated, whether it be leprosy, AIDS, or an illness that will come forward in our lifetimes.
ReplyDeleteThat is the key... people need to be educated. They need to know the dos and dont associated with diseases instead of blindly believing the worst or worse, pretending it doesnt exist or wont affect them
DeleteLiving in the United States, Leprosy is something that I never think about. Thank you for your informative post and making me aware that for those that need it, there is treatment available.
ReplyDelete