"BE THE CHANGE YOU WISH TO SEE IN THE WORLD." - M. GANDHI

Light in a Leprosy Colony

In the midst of darkness, light persists.” – Mahatma Gandhi

 

In the Northeastern state of Bihar, India, there is a collective of 22 leprosy colonies served by the Little Flower Leprosy Welfare Association. Little Flower is headquartered in the Sunderpur colony, tucked right on the border of Nepal. They have a small school, a microbusiness venture, and a leprosy hospital. Rising Star Outreach was asked to take over running their school until our own new campus is built, and a lovely partnership has since been formed. Due to my role as the Development Director for Rising Star Outreach, I spent some time visiting Little Flower in January of 2020.

 

As mentioned, Bihar is in the eastern part of India and borders on Nepal. In January, the weather is temperate on sunny days, but in the unheated, plastered, and cement rooms that we stayed in, you often felt damp and chill, especially in the mornings and evenings. Smoke, pollution, and fog can be particularly bad this time of year, and the sky was hazy and thick with it. Driving there at night, over the bumpy, pitted, often dirt roads, we laughed in disbelief as – for hours – our bus driver somehow managed to make correct turns despite the fog being so thick you could barely see a few feet in front of you; he even managed to stop in time for the lone cows that often seemed to magically appear out of the fog, right in front of us. Overall, it took us 7 hours to drive the 125 miles to reach our destination. It was a memorable start to what would be an unforgettable trip. 

It was after 10 PM when we finally pulled up at our destination outside of the Little Flower complex. We expected everyone to be asleep and out of the cold, back in the school hostel or the nearby colonies. Yet out in the thick fog, we suddenly noticed a large group of smiling faces waiting for us as we stepped off the bus. The children and their teachers had waited to welcome us and came out as soon as they’d heard that we were close. They greeted us with colorful flower garlands, common in India, and broke out into a song they’d been practicing: “Happy Welcome to You!” It was touching to see their happy faces, wrapped in scarves and hats against the chilly night, so eager and excited to share their culture and home with us. We felt wrapped in their love instantly.

 

We spent our first few days in Bihar at the school, visiting with the students and sitting in on some classes. In the afternoons, we would leave and head to a nearby colony to work on a toilet construction project. The children trailed after us like a group of ducklings, always wanting to help or be of service and always with the largest smiles on their faces. They taught us their calisthenics routine right on the spot when they saw us stretching and insisted on carrying the bricks right alongside us – down to the smallest child – as we worked on building the wall of the community toilet. Nisha, Sagir, Basil, and the others – the memory of their huge smiles still brings a smile to my face, almost unconsciously, every time I think of them. Those children are such a light. 

On our second day in Bihar, we were taken to the nearby leprosy hospital to visit with some of the patients. I didn’t know what to expect, but what we found was unlike the brightly lit, white, sterile hospitals I was used to. The women’s and men’s wards were long rooms, with beds lining each wall, down in a row. The plastered walls were unadorned, but for some wires, and stained from the condensation; in many areas, you could see the various layers of paint and plaster that had crumbled off. The small metal beds had a thin mattress and what few pieces of furniture were in the room, beyond that, were rusted and old. However, each of those thin mattresses was covered in a brightly patterned or colored sheet, bringing some level of cheer to the room. On each bed sat a patient, wrapped from head to toe in scarves and thin blankets, trying to keep warm.

 

We started in the women’s room and received some shy smiles as we moved along the beds, holding hands, giving hugs, and then eventually playing a little music. Our director in this area, an Indian native, originally from Delhi, had started coming to the hospital each week with a stereo and music so as to dance with the patients. Standing in that room, I’ll admit I felt pretty dubious and our dancing felt a little forced. I was worried that we would come across as patronizing to these men and women, but he insisted they loved it. Indeed, the women did seem to enjoy it. 

 

We soon moved on to the men’s ward, and this was even more sad than the women’s. When we arrived, the power was out in this section of the hospital. Often in this region, and indeed, across India, there are power cuts and blackouts that can last for hours due to the unreliable power grid. Unfortunately, it seemed the hospital’s backup generator couldn’t light the entire facility. Entering the men’s ward, I felt chilled – not just by the cold, unheated air in this darkened room, but by the terribly dismal sight that met my eyes.

 

The men sat cross-legged on their beds, just as the women, wrapped in their blankets, wearing every article of clothing they had with them just to keep warm. They merely sat there, sitting silently in the dark, staring blankly ahead at the space in front of them or down at their hands. The faces that did turn to look at us as we walked in looked indescribably forlorn and resigned. There were no smiles. 

When we entered, it was quite cold. Earlier in the week, I had been in a classroom similar to this room that was so cold you could see the children’s breath in the air as they breathed, listening to the instruction. It was heartbreaking. Here, there seemed to be nothing to even enlighten the patients’ minds, but instead just the cold, quiet darkness. What little light there was filtered in from the doorway at the end of the room and the few, partially-covered, barred windows at one end. To me, it felt incredibly bleak. 

 

We all turned on the flashlights on our phones, and my group began making their way through the room, smiling, quietly saying namaste in greeting, and occasionally taking hands in ours. One of our board members, who I was traveling with, made her way around the room, hugging everyone. I followed them into the room and smiled and nodded my head at those I made eye contact with, but again self-consciously worried about how best to act. What was culturally appropriate? What was encouraging and empowering? Why, despite all I knew about the disease, did I still feel somewhat afraid? I was ashamed of my own disquiet and uncertainty.

 

One of those accompanying our group soon produced a small stereo and turned on the upbeat music for the dancing. Suku, our Northern Area Director, began dancing and clapping his hands in time with the beat. The women I was traveling with also began dancing and clapping as we all held our phone’s flashlights high up in the air to try to lighten the dark room. I was a bit hesitant and looked to the patient next to me to gauge his reaction. His bald head was wrapped in a checkered scarf, one of his eyes was completely glazed over (likely due to prolonged damage from being unable to blink), both eyes were tinged with red, and he’d had a vacant expression on his face when we entered. Suddenly, a small smile spread across his face, and he began to quietly clap along with the music. Just the sight of this small change in him softened my heart a little, and I chuckled at the display of my dancing group members. When he heard me laugh, he turned to look at me, and his smile widened; then, he nodded at me. That one simple act caused an instant change in my heart. 

 

I no longer felt disconnected from the people around me; I no longer felt the worry of making a cultural offense. Instead, I felt a warmth spread through my heart, and I suddenly felt drawn to those in the room. These were my brothers. 

It is sometimes amazing what little things trigger a change in us, and this moment of shared humanity was one of them. Something as simple as an honest acknowledgment and smile was all it took. We both smiled and laughed at the silly dancing before us and seemed to recognize the pure intention behind the action. Suddenly we were enjoying the moment, together. I can imagine this being what so many of the leprosy-affected crave from those they see on the streets or in their communities – to be looked at, truly, if even only for a moment. Professor and author, Brene Brown, suggests that “Connection is why we’re here… it’s what gives purpose and meaning to our lives, and without it there is suffering.” I suddenly felt grateful for the connection this man offered me and how he put to rest my own insecurities. I had come hoping to offer comfort to him but – as is often the case – felt that service in reverse.

 

A few moments later, a man who looked to be about middle-age got up off his bed, without a word (that I could hear), and began to dance to the music like it was nobody’s business. He waved his arms and spun and swayed around the aisle on his bandaged feet even as the bandages started to unroll! He moved his hips better than my former salsa dancing instructor and seemed to be engrossed in the music. Everyone else started to whistle and whoop along. The whole feeling of the room was enlivened and animated.

 

Suddenly, the lights in the room came back on. Everyone cheered. Yet the man dancing didn’t even skip a beat! He kept dancing – the electricity was inconsequential! It seemed to me almost as if he were dancing to make a statement. We continued to watch him and were moved by the life he brought to the room. Not only was there now visible light in the room, but I think we all also felt a lightening in our hearts. I know that I truly did. However, it wasn’t just thanks to the man whose dancing animated the room. The light I felt came first from the simple smile of a fellow human being – of my brother there – and of what I felt seeing his smile in that seemingly dark place. I learned something from him and looked forward to returning the next day to learn more. I was also reminded of a lesson that I have witnessed again and again and which is most dear to my heart: we all have a light within us that we can share to lighten the lives of one another. I felt that light that day, in a cold, darkened room of a leprosy hospital, thanks to the smile from a new friend and the determined courage of another.

 

 

Tawna Fowler

Rising Star Outreach

Development Director

11 Reasons the STARS Program is the Best Charity Sponsorship to Get Involved With!

 

Do you believe in your power to change the world? Well, we sure do! You can change the world one life at a time by becoming a sponsor to a Rising Star. Here are 11 reasons why a STARS sponsorship is the best charity sponsorship to get involved with to make your impact! 

 

1. India already makes up 60 percent of the world’s new leprosy cases. To make the most of supporters’ donations and efforts, we are building and setting up educational opportunities where they can make the biggest impact for good. Our school in Bihar is located in one of the densest leprosy-affected areas in India.

 

2. Your monthly payment goes to provide life-changing programs and provisions for some of the most marginalized people in the world.

 

 

3. We use a unique blind survey pairing process that allows sponsors and students to be matched based solely on interests and the student’s immediate needs. Students’ preferences in what kind of sponsor they would like to be paired up with are equally considered in the pairing process. 

 

4. Live video chats from India! You can schedule live chats with your student from the other side of the world. 

 

 

5. Our sponsorships are fair and equally distributed where needed most. 

 

6. Our education program aims to be self-maintaining. To hit the goal of making this program fully sustainable, each student needs four sponsors to cover the cost of their education and boarding.

 

7. Students go beyond just getting a passing grade. In addition to their required studies, students are taught life skills that will set them up for success after they graduate and make their way into the professional world. 

 

 

8. Students have access to a dedicated space on our campuses to practice their spirituality and meditation. Our students come from a number of different religions, and we celebrate the beauty of their personal beliefs and traditions. 

 

9. Extracurricular activities! Have you ever seen the face of a seventeen-year-old boy who gets to go to the zoo for the first time in his life? We have, and that smile is just as big as the ones that the first graders have on their faces. Sports, arts, dance, and field trips are just some of our school’s enrichment opportunities for children who wouldn’t otherwise have access to these experiences. 

 

 

10. Supporters and sponsors can donate to our college scholarship fund and help send students on to college to further their education and meaningful employment prospects. 

 

11. One of the most powerful ways to address the stigma of leprosy head-on is through the power of education. Providing educational opportunities to those affected by leprosy empowers them with the tools and resources they need to rise up and challenge outdated public opinion and access more resources that have the potential to eradicate leprosy once in for all.

 

Click here to start your sponsorship TODAY!

World Leprosy Day 2021

 

  Whether at a friend’s birthday party or over a holiday dinner, most of us are asked what we do for work. As Rising Star Outreach employees, we love answering this question because we are passionate about what we do and the cause we are behind. Oftentimes, the simple answer, “I work for a nonprofit organization that serves individuals and families affected by leprosy in India,” leads to more questions because the topic of leprosy is so rare. We encourage these critical conversations in order to expand public awareness about this forgotten global health crisis. As the cliche goes, “there are no bad questions.” 

   In honor of World Leprosy Day, we are addressing some of the most commonly asked questions and myths associated with this disease. The first step to real change is through the power of education!

 

Mr. Prakash Boddu, National General Manager, helping put on a pair of MCR shoes to a patient. MCR or Microcellular Rubber shoes help decrease the amount of ulcers that patients get.

Staff from our partners at Karpaga Vinayaga Institute Of Medical Sciences And Research Center helping prepare and distribute different needed medications.

 

 

 

 

 

 

 

 

 

 

Q: Leprosy is still a thing?
A: It sure is. In fact, it still affects the lives of millions. It tends to be quite taboo and shameful in many communities, so, unfortunately, stigma and fear keep the realities surrounding the disease hidden from many parts of the world.

Q: Is leprosy contagious?
A: Not like you may think! Most patients are genetically predisposed to the disease and contract it through very long term exposure, living in poor conditions, and with a compromised immune system. In fact, it is estimated that 95% of adults cannot even contract leprosy!

Q: Can leprosy be cured?
A: YES!! There is a multidrug therapy that will rid their body of active leprosy. There is exciting progress with a possible new vaccine that doctors in India are working hard to develop. For the at-risk children in India, this vaccine could mean facing a future truly free of leprosy for the first time in human history.

Q: Why are people still afraid of leprosy if it has a cure and isn’t as contagious as people might think?
A: Short answer: Stigma. Many people living in areas of the world where leprosy is more prevalent believe that people afflicted with leprosy have this disease due to sin or curse. People with leprosy are often forced to leave their homes and move to leprosy colonies. The fear of putting themselves and their family at this risk keeps many patients from coming forward to seek treatment.

 

   To honor those affected by leprosy and its stigma, share the truth about the disease with those around you and help us remember the “forgotten” by sharing this blog post on social media. Help others see and understand the millions of leprosy-affected people that are constantly misunderstood and overlooked. Tag us too! @risingstaroutreach

Source: https://www.cdc.gov/features/world-leprosy-day/index.html

 

 

 

 

7 Ways You Can Give Back to Leprosy Patients This Holiday Season

Leprosy Hospital in India

Rising Star Outreach at Leprosy Hospital in India

Believe it or not, the year 2020 is finally drawing close to its end! As the holiday season is among us, you may be looking for ways to help someone in need or give back. What better way to make this year brighter than to serve? Did you know there are millions of people throughout the world suffering from leprosy or leprosy-related disabilities? You can make a difference in their lives, and here’s how:

Leprosy Hospital in India

Rising Star Outreach at Leprosy Hospital in India

1. Sponsor a Child- You can form a special mentor-like friendship with a student whom you sponsor, which can change not only their lives but yours as well. Want to send a holiday or birthday gift? We encourage all sponsors to send school gifts on behalf of thier students that the entire school or mulitple students can enjoy. Here is a gift guide that can help  https://risingstaroutreach.org/sponsor-a-child/sponsor-a-child-gift-guide-3rd-5th-standard/

2. Start a Campaign- Host an event to raise money, spread awareness or gather supplies, plan a service project, or donate your special day by asking loved ones for donations instead of gifts. If you need assistance in coming up with ideas, we can help! https://risingstaroutreach.org/get-involved/campaigns/

3. Attend an Event- By attending a fundraising event, you can learn more about leprosy and the fight to eliminate it from the world. Enjoy a night of entertainment, stories, auctions, and meet other amazing people who also want to make an impact in the world. For a list of events, see this calendar: https://risingstaroutreach.org/get-involved/events/

4. Become a Volunteer- Volunteering is one of the most valuable gifts you can give! Whether that be through professional advising, interning, or just giving a little of your time, it goes a long way! No experience is necessary, so click this link for more information and to fill out a form to sign up: https://risingstaroutreach.org/get-involved/work-with-us/

5. Become an Ambassador- There are many ways to be an ambassador. Follow us on social media and like, share, and comment on our posts! Talk to your loved ones about leprosy to clear up misconceptions and raise awareness. Host a fundraiser of your own! Attend or volunteer at our events, or ask us to be a guest speaker at yours. Click this link for more information on how to be an ambassador:  https://risingstaroutreach.org/get-involved/be-an-ambassador/

6. Select Rising Star Outreach as your Amazon Smile Charity- Did you know that a portion of every purchase on Amazon can go to a charity of your choice at no extra cost to you? All you have to do is sign up on amazonsmile.com and type in “Rising Star Outreach” to select this charity, and after that, every purchase you make will donate a portion to Rising Star Outreach. So easy, so helpful, and doesn’t require any extra time or resources from you!

7. Make a Donation- Whether it’s a recurring donation or a one-time donation, every little bit goes a long way. Donate on behalf of your organization or yourself, you choose! You can also dedicate your donation to someone, just select yes while filling out the form and enter in the information. https://give.risingstaroutreach.org/product/general-fund/give-where-needed-most

As you can see, you can help leprosy patients in a variety of ways, some of which are at no cost to you. The stigma associated with leprosy has been carried down for centuries, and with your help, we can educate and inform others of the truths about the disease, provide those who have it with resources and healthcare, and also prevent even more from ever having to endure the lasting effects it can have. We hope this has inspired you to make a difference, and wish you a very wonderful holiday season!

For more information visit https://risingstaroutreach.org/.

 

Brittany Hunter is a marketing specialist passionate about non-profit work. She has volunteered in Portugal, Costa Rica, and throughout the United States. She and her husband, Josh, currently reside in Sandy, Utah, and in their spare time can be found hiking, traveling, or spending time with family.

15 Things You May Not Know About Leprosy

You’ve undoubtedly heard about the ancient disease that divided communities and forced its victims into isolation. But leprosy has been long gone from modern civilizations, right? Actually… no. Unfortunately, millions of people are still enduring the pains, fears, and stigmas of this unforgiving infection. Here’s what you should know about leprosy and what you can do to help fight it. 

  1. Ancient: Leprosy has been around for as long as history shows. The earliest possible recorded case was found in an Egyptian Papyrus document from 1550 B.C.
  2. Different Names: Leprosy is also known as Hansen’s disease due to a Norwegian scientist in 1873 named Gerhard Henrik Armauer Hansen, who discovered that the cause of leprosy is a bacteria called Mycobacterium leprae.
  3. Modern Cases: There are an estimated 2-3 million people worldwide that are living with leprosy or leprosy-related disabilities.
  4. Majority: 60% of the world’s leprosy cases are found in India, with over 1,000 leprosy colonies. Other countries with high numbers of leprosy patients are Brazil, Indonesia, and parts of Africa. 
  5. Vulnerable: Though leprosy can develop at any age, it is most common in people aged 5-15 or over 30. There are more men diagnosed than women, though it is unknown if that is due to genetics, environment, or another explanation.
  6. Slow: Leprosy can be in the body for up to 20 years before any symptoms show, though it typically takes about 5 years.
  7. Effects: Some symptoms of leprosy can be major peripheral nerve damage and muscle weakness, damage to the skin, blindness, nose disfigurement, paralysis, and crippling of hands feet along with other possible symptoms as well.
  8. Long Exposure: Leprosy is believed to be spread through breathing in droplets from coughs and sneezes of an untreated leprosy patient. It requires close contact with someone with untreated leprosy for a long period of time. Merely sitting near someone with leprosy, hugging them, or shaking their hand will not transmit the disease. 
  9. Immuned: Over 95% of people throughout the world have a natural immunity to leprosy, so it is very unlikely to get the disease unless you live in a country where the disease is prominent.
  10. Treatment: Fortunately, there is a combination of antibiotic drugs (known as multi-drug therapy) that can cure leprosy. After two days of antibiotic treatments, a leprosy patient is no longer contagious, though treatment typically lasts one to two years. If leprosy is detected early on, it will usually prevent a person from having common side effects and disabilities.  
  11. Access: The World Health Organization currently provides free treatment through multi-drug therapy to leprosy patients in countries where leprosy is common. Over 16 million patients have been treated in the past 20 years.
  12. Damage: There is no way to reverse the effects of permanent nerve damage and disfigurations caused by leprosy, so early detection is very important. 
  13. Medical Discrimination: Even though there is now a cure, many people still have misunderstandings about leprosy, and many of those suffering from leprosy are still isolated and discriminated against. They are considered unclean, and even many doctors refuse to treat them.
  14. World Leprosy Day: Every year on the last Sunday of January, World Leprosy Day is observed. This began in 1954 when Raoul Follereau, a French philanthropist, wanted to raise awareness about leprosy and teach people that it is easily curable.
  15. Humans: Other than humans, armadillos are the only animal known to be able to get leprosy.

So what can you do to help leprosy patients? Volunteer, donate, sponsor a child, attend an event, start a campaign, post about it on social media and tell your friends and family what you’ve learned (see https://risingstaroutreach.org/get-involved/ for information on how to get involved with each of these things). The more we share facts about leprosy and eliminate the long-believed stigmas, the more leprosy patients will be accepted in their own communities and can live fuller, happier lives. 

Share this post on Facebook, Instagram, Twitter, LinkedIn

  

Brittany Hunter is a marketing specialist passionate about non-profit work. She has volunteered in Portugal, Costa Rica, and throughout the United States. She and her husband, Josh, currently reside in Sandy, Utah, and in their spare time can be found hiking, traveling, or spending time with family.

 

 

Sources:

  1. https://www.livescience.com/56275-strange-facts-about-leprosy.html
  2. https://www.cdc.gov/features/world-leprosy-day/index.html
  3. https://www.cdc.gov/leprosy/about/about.html
  4. https://www.who.int/news-room/fact-sheets/detail/leprosy
  5. https://risingstaroutreach.org/about-us/leprosy/

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