Ineffable: My [Be the Change] journey.

  1. Drasm19
    Honeycomb Oct 14, 2019

    Drasm19 , Oct 14, 2019 :
    Sometimes all we need is a leap of faith and things start falling in their place.

    I have no other words to describe the wonderful experience I had last week.

    As part of the "Be the change" initiative, I decided to fulfill my lifelong dream of providing free medical care to everyone once a day, every week.

    I had a rough idea about the uphill battle that I'd have to undertake in order to get in the near vicinity my goal but this was far more daunting than what I expected.

    After a few days of posting my ideas on the forum, @dsmonteiro gave me the good news that I had been shortlisted for the challenge, he has been a constant source of motivation and support all along the journey.

    The challenge was to start free consultation on every Saturday starting on 05/10/19 from 04:00 pm to 07:00pm at an orphanage/old age home run by my local church. I approached the orphanage and gave them detailed summary of what I was planning to do.

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    I had a deeply engrossing conversation with the Sister Alphonse, the current Mother Superior of the institution. She explained to me that the institution is absolutely free and welcoming to anyone and everyone and is one of the last refuge for people suffering from leprosy, tuberculosis and other related ailments. The institution was home to more than 300 patients who were taken care of by a bunch of extraordinarily selfless souls. She explained to me how most of the patients were either rejected by their families upon discovering that he/she was suffering from leprosy or were simply the outcasts of the society. This included women, children and many young adults.

    The institution runs purely on the generosity of the well wishers, who handed out cash and necessary medications to them. They firmly believe that this act of kindness will continue in the future as well. The dispensary at the institute was fairly stocked with drugs specifically used to treat leprosy and tuberculosis, but was lacking in a few key medications needed to cure basic ailments. Although mother Superior was kind enough to tell me that she would buy any medications needed for the patients, I didn't want to burden her anymore. They were already providing free meals and accomodation for everyone, I told her I'll take care of it.

    I contacted several NGO's in my search for providing basic medications free of cost with my consultations at the institute.

    Many were supportive of my endeavor and enlightened me about the widespread scarcity of basic medications. I discussed the same with a few of my colleagues and we decided to spend our Pocket money for a good cause. We ended up having enough medications for 30-40 patients, but this was no way close to the required number.

    Anyway, we decided to go ahead with the plan. On 05/09/19 at 4:00pm we started giving free consultations to the patients. I came across a lot of smiling faces. Everyone shared a little bit about themselves to me, many of them were thrown out of their families and villages after being diagnosed with leprosy, others heard about this institution and found their way here.

    A particularly saddening thing about these wonderful individuals is that most of them have to resort to begging to support their respective families, the same families who had thrown them out on the streets to suffer.

    Most of them are denied normal employment due to their medical condition and social stigma.

    Leprosy is contagious and is one of the worst diseases that mankind had to deal with. Leprosy has been around for thousands of years and has been extensively studied by ancient and modern medicine.

    Mycobacterium leprae is the causative organism responsible for this disease. People throughout history have looked down upon it as a curse/ taboo and shun away from talking about it, which is a huge roadblock to raising awareness about the same. India accounts for almost half of all the leprosy cases worldwide. Free treatment and community reach programmes by the government has helped to reduce the cases in the last 30 years.

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    In rural areas, tackling leprosy is still a major hurdle due to prevalent social customs and superstitions associated with the disease.

    Leprosy spreads via bodily fluids/discharges from the ulcerated wounds of the infected person or cough. The fact that people can remain asymptomatic for well over 20 years before symptoms kick in made it pretty hard in the past to control the disease. The disease primarily affects skin, damages nerves, respiratory tract and eyes.

    Most often patients have to be amputated to prevent further damage.

    Leprosy is curable with multidrug therapy. It is still classified as one of the neglected tropical diseases (NTD's) , diseases that are prevalent in poor tropical countries and get less funding and research than the other major diseases prevalent in such low income countries.

    World health organization and Government of India have made commendable strides in the right direction by giving free medications and treatment facilities to the patients.

    We can't completely blame families for trying to distance themselves from the patients. Indian society is a complex multifaceted phenomenon with religion, caste, food and preconceived notions playing a central role in everyone's lives.

    Some people attribute leprosy to bad karma and distance themselves from the families of the patients, others even refuse to talk to the members of the patients family who aren't affected by the disease.

    This makes it hard to tackle the disease effectively since many shy away from treatment until it becomes unavoidable.

    Patrick ( name changed) is a seven year old orphan who came to me with cough and fever. Patrick has been in the orphanage since he was three, he came here along with his parents seeking treatment for his father who was suffering from leprosy. Patrick's father went missing from the hospital after a few months and hasn't returned yet. Patrick's mother was with him till age five. She left him at the orphanage and went looking for better prospects, never to return again.

    Mary (name changed) was just 22 when she got married, a year later she was diagnosed with leprosy that required amputation of her left leg, her husband and her family abandoned her. The institution is a home for people like him who have no where else to go.

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    It was often challenging for me to discuss about the disease with the patient since most of them blame themselves for their condition.

    Counselling is a major part of the treatment since many of them suffer from depression due to the constant pain and lack of family support.

    Some of them wept, others looked away as I assured them that it wasn't their fault. I'm not sure if they believed me or if I made any difference to their suffering. Most of them are melancholic. I hope that someday they'll realize that it was never ever their fault.

    As I was about to wrap up, Patrick came to me and showed me his new story book.

    I smiled and so did everyone around us.

    After three hours, it was time for evening prayers and dinner at the institution. We thanked everyone for their time and promised to be back again next week on the same day.

  2. Drasm19
    Honeycomb Oct 16, 2019

    Stickied Post
    Drasm19 , Oct 16, 2019 :
    Week 2: (12/10/19)

    One of the challenging aspects of my job as a physician is to address the issue of addiction that many of my patients seem to struggle with.
    This is always a tough conversation as many are in constant self denial about their addiction.
    Everyday I see patients who are suffering directly or indirectly due to their addictions to different carcinogens.

    One of the first things I noticed last week was the rampant use of tobacco among the patients of the orphanage, as I was discussing the same with the Mother Superior of the institution, she confided in me that despite their best efforts and counselling, many patients are constantly finding new ways to acquire tobacco and in some cases alcohol as well.
    Since most of them have compromised immunity due to their preexisting conditions (Leprosy, tuberculosis etc.), Consumption of alcohol and tobacco chewing poses a great threat to them.
    Some of them have already started displaying primary symptoms of oral cancer.

    After our discussions, we decided to call for a meeting at the institution to raise awareness about tobacco use and imminent risk of developing oropharyngeal cancer. The meeting lasted for thirty minutes and was generally well received. I'm pretty sure that most of them won't be able to quit their addictions despite my dire warnings regarding the worst case scenarios awaiting them, but I hope they'll think twice before succumbing to their addiction henceforth. I gave Mother Superior instructions to send anyone interested in de-addiction to an NGO that specializes in the same.

    Another thing that I noticed among my patients was the lack of oral hygiene. The incessant use of tobacco and other chewables has led to a drastic rise in mouth ulcers and infections amongst the patients.
    One of the ways to tackle this was to emphasize the importance of maintenaning a good oral hygiene among the patients along with reducing tobacco use. I'm in talks with an NGO to provide betadine gargles/mouth wash to the patients free of cost. This is one of the cheapest and the most effective way to improve oral hygiene.

    The most depressing part of this week's visit was a new patient that I came across. Adam (name changed) used to be a day labourer with a small but happy family. He dreamt of owning a home and not having to pay rent someday. His children were his best hope as both of them were good in their studies.
    " I wanted my younger daughter to be a doctor, like you, sir."
    He said, as a tear escaped his eyes.
    His dreams were shattered when three years ago he started having pain and weakness in his legs, which kept on increasing over several months, after which he could no longer lift his legs or feel any pain.

    "When my legs started paining at first, I prayed to God that I don't want this excruciating pain, seems like God has a twisted sense of humor, now there's no more pain, just numbness. I wish I could feel something, even if it is just pain".
    Adam said, looking at his unresponsive legs.

    Adam is suffering from a rare disease: Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrings Disease. It is a type of rare motor neuron disease. Sir Stephen Hawking, celebrated British theoretical physicist, had the same disease. The disease has no known cure and treatment is mostly palliative and symptomatic. Adam may have three or two years before his disease makes it impossible for him to move or speak. His family had already spent more than what they could afford, trying to find a diagnosis for his condition. Now that they know the reason behind his sudden loss of strength, they are unable to afford his treatment.

    After teaching him a few simple physiotherapy based excercises and going through his previous treatment records, I referred him to a higher centre for further management. Hopefully, he'll get better treatment and palliative care over there.

    Last edited: Oct 17, 2019

  3. eye842
    Lollipop Oct 14, 2019

    eye842 , Oct 14, 2019 :
    Hats off, you just made my day but more important you made those peoples day and hopefully you made their lives better.

    Btw: Your attachments doesn't show on PC.

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  4. BobbyV8_
    The Showcase Reviewer Oct 16, 2019

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  5. Starcommander
    KitKat Oct 16, 2019

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  6. Wonderwoman13
    KitKat Oct 17, 2019

    Wonderwoman13 , Oct 17, 2019 :
    Commendable job, @Drasm19

    Good to see your love and dedication towards your patients.
    : )

    We need more people and specifically more doctors like you in today's gen.

    Thankyou for your awesome work! : )
    Last edited: Oct 17, 2019

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  7. Impersonal
    Jelly Bean Oct 17, 2019

    Impersonal , Oct 17, 2019 :
    Great initiative, Thank You @Drasm19 , I'm speechless, such a wonderful thing to do for the less fortunate people, sadly we live in a very fast paced world, and that has made us all very ... ignorant, we know what celebrity is dating whom, know what superhero movies will come out in the next years, yet we tend to forget something like leprosy, a affliction that was omnipresent throughout humanity's history, that is mentioned in all our history sources, and in most religions holy books, it was, still is causing lots of suffering, despair, isolation to so many, inocent people, so beside, actually helping those particular individuals, this thread is such a marvelous initiative because it raises AWARENESS ! Thank you again for your work, you have my eternal respect and know you sir are a true Doctor !
    Last edited: Oct 17, 2019

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  8. Drasm19
    Honeycomb Oct 23, 2019

    Drasm19 , Oct 23, 2019 :
    Week 3: (19/10/19)

    For the last two weeks we've been updating a list of patients who need urgent amputation and debridement.
    Untreated leprosy causes severe nerve damage and starts to progress to new parts of the body. Sometimes amputation is the only effective way of controlling the spread of infection and saving the life of a patient.

    The worst part of the whole procedure is to inform the patient about the impending amputation. Most of them start tearing up as soon as they hear those dreaded words, others try to bargain, asking about homeo or other treatment options that can somehow miraculously heal them. I personally don't have anything against someone wanting to find alternatives or second opinions, but it should be scientific and backed by research. Homeopathy has neither of those characteristics. Placebos don't work when you are dealing with something like leprosy.

    Most of the cases that needs amputation that I've come across in the last two weeks have these common traits:
    1) Patient finds out he has leprosy.
    2) Patient refuses/defaults from original treatment plan.
    3) Patient seeks alternatives like Homeopathy/Natural Remedies.
    4) Disease has progressed far beyond the initial state and now the patient needs immediate amputation to save his/her life.

    Again, these are my personal opinions and I'm not asking any of the members to refrain from alternative medicines, just make sure that whatever you are injecting/eating to cure your ailment has solid scientific evidence and research to back it up.

    We ended up compiling a list of 17 individuals who will be operated at a Government hospital on the second week of November. We started off by cleaning their wounds along with debridement ( removing dead/infective tissues) and giving them antibiotics to prepare them for the surgery. We dressed their wounds and gave them all a new set of bandages that they can use in the event of bleeding.

    One of the major side effects of amputation is a psychological phenomenon called "phantom limb", amputees feel like the amputated part is still attached to their bodies and end up having severe pain in those amputated parts. We explained to all the 17 patients about the possibility of having to go through this phase and assured them that we'll be close by them when they need us.


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  9. Drasm19
    Honeycomb Oct 23, 2019

    Drasm19 , Oct 23, 2019 :
    Thank you for your kind words and Suggestions, I hope the attachments are visible on PC now.

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  10. Drasm19
    Honeycomb Oct 23, 2019

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  11. Drasm19
    Honeycomb Oct 23, 2019

    Drasm19 , Oct 23, 2019 :
    Thankyou for your words of appreciation.
    Have a good day!

  12. Drasm19
    Honeycomb Oct 23, 2019

    Drasm19 , Oct 23, 2019 :
    You've all been very encouraging and supportive.

  13. Drasm19
    Honeycomb Oct 23, 2019

    Drasm19 , Oct 23, 2019 :
    Thankyou for helping me with the thread placement. Your words are very encouraging. I'm thankful to everyone in the community for giving me the support and encouragement.

  14. eye842
    Lollipop Oct 23, 2019

    eye842 , Oct 23, 2019 :
    Yes they are visible.

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  15. Drasm19
    Honeycomb Oct 26, 2019

    Drasm19 , Oct 26, 2019 :
    Week 4: (26/10/19)

    This week marks the beginning of weeklong festivities all across India. Deepavali or Diwali is the festival of lights and the waves of happiness and excitement was in vivid display all over the orphanage.

    Patrick came running towards me, waving his hands in joy, he was wearing a new shirt for Diwali and as soon as I wished him, he ran back towards the nuns who had been taking care of him. I couldn't help but smile.
    Many patients came forward and greeting me with their warm wishes and inquiring about my plans for Diwali.

    "Doctor Saab, aap ghar nahi jaa rahen?"
    Doctor, aren't going back home (for Diwali)?

    I smiled and told them that I wasn't planning on going back home.

    "Toh phir aaj humare saath manayiye naa"
    Then, just celebrate Diwali with us today.

    Francis (name changed) has been enthusiastically helping me for last three weeks, to understand the patients better by telling me about their previous medical history and addictions. He works as a store keeper/pharmacist at the orphanage and takes care of minor ailments with over the counter medicines. We've developed a good comradeship and I couldn't say no to his invitation.

    We started the consultations and quickly realized that many of the patients have gone out to meet their families on Diwali.

    "Some of them can't go inside the very home they've been a part of, they simply wave at their family members and wish them from afar. They come back here and sit broken hearted. I see this happen every year. They say it's the festival of lights but for many of these patients it's a reminder of the constant darkness of isolation in their lives. There's nothing worse than being treated like a stranger by people whom we've known all our lives"

    Francis tells me, looking compassionately at one such patient who was sitting in the garden by himself, lost in thoughts.

    We had about sixty patients, among them was Sebastian (name changed) , a 24 year old male with leprosy on his right foot. Right off the bat I noticed many scattered hesitation marks all over his hands. He looks at me and smiles.

    "This is the only problem he has, erm, apart from the leprosy.."
    Francis gestures at Sebastian's half frozen smile.

    "He wandered into the orphanage three days ago, suffering from ulcers all over his right foot. When we questioned him about his whereabouts, he gave us conflicting accounts, and then he started smiling and laughing, and hasn't stopped laughing intermittently for three days. Most of the patients are scared to going near him."

    There was pain and confusion across francis's face as he looked at Sebastian. I was pleasantly surprised to learn that Sebastian spoke good english, although he had episodes of uncontrolled laughter in between my questions.

    Sebastian might have had undetected bipolar syndrome/mania or could've developed some psychiatric condition over the years. This could also be a result of unchecked drug abuse. I decided to refer him to a psychiatric hospital for further management. Patients like him always pose a danger to others around them. In view of the safety of other patients and care takers, Sebastian has to receive some psychiatric intervention before it's too late.

    With the consultations finally over, I was invited to have dinner with everyone at the orphanage. I wished everyone a Happy Diwali and thanked them for their kindness. I looked at my patients happily enjoying their dinner and felt at ease. This may not be their home, but they've definitely found a new family here. Life has a weird way of making us feel welcome in the most unexpected places. I just hope that these people rediscover hope around here.
    Last edited: Nov 9, 2019

  16. Drasm19
    Honeycomb Nov 9, 2019

    Drasm19 , Nov 9, 2019 :
    Week 5: ( 02/11/19)

    This week I was accompanied by a surgeon from a nearby government hospital. We talked to the set of patients who were planning to get amputation. Mother Superior informed me that half of the patients we drafted for surgery were now unwilling/hesitant about going through with it.

    We counselled them about the pros/cons of having the surgery and assured them that ultimately it was their call to whether go ahead with it or not. We are expecting to make a final draft next week regarding the actual number of patients.

    Due to the sudden fall of AQI in recent weeks, most of the patients have developed COPD. I advised them to use pollution masks whenever they go outside and to take supplements to combat the ill effects of pollution.


  17. Drasm19
    Honeycomb Nov 11, 2019

    Drasm19 , via OnePlus 5T , Nov 11, 2019 :
    Week 6: (09/11/19)

    We have finally managed to compile a list of 7 patients who are willing to undergo amputation. Many patients have backtracked after initially agreeing to the procedure. We explained to all of them that the surgery was being performed as there was no other alternative to prevent further deterioration of their condition. Patients who were unwilling to opt for surgery were duly informed that within a span of few months, their disease will probably spread to other parts and might be even inoperable at later stages.

    A couple of patients had to be hospitalized due to severe respiratory distress. Most of the patients are responding well to the treatment. I have advised them to use sweaters and take care of themselves in the winter months. I have also requested the staff to provide mosquito nets to the patients to avoid dengue outbreak.

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  18. Drasm19
    Honeycomb Nov 17, 2019 at 5:39 PM

    Drasm19 , via OnePlus 5T , Nov 17, 2019 at 5:39 PM :
    Week 7: (16/11/19):

    Today was a big day for us.
    We finally did the amputation for seven patients whom we enlisted last week. The surgeries were done by a team of volunteer doctors and nurses. It went smoothly and all the patients are making good recovery as I write this.
    I will keep you guys posted.

    Good night.

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