I am a person who has been diagnosed with an ancient disease: leprosy. Ask me anything!

So when you say you’re cured, does that mean you’re permanently cured or do you continue to need treatments?

I am permanently cured.

However, for many people there continue to be complications even after being cured. This has mainly to do with not being treated early enough. They are no longer contagious, yet they to need what we call "care after cure".

What specific complications continue after being cured?

Great answer by eucalyptusmacrocarpa below!

The complications are mostly related to nerve damage, which leads to loss of sensation and also mobility. Most persons affected by leprosy experience this in their hands, feet and eyes.

There is also what we call leprosy reactions which can happen before, during or after treatment.

What would be an early indicator of having leprosy?

Great answer by Biologering below!

Skin patches which are a different colour from the rest of your skin (in brown/black skin the patches are lighter; in light-skinned people the patches are reddish in colour) and with no feeling (meaning that it is numb and has no sensation)

https://www.leprosymission.org/what-is-leprosy/what-are-the-symptoms-of-leprosy/

Are the patches soft or velvety feeling, or rough and scaly? If left untreated, does the disease always progress, or is there a chance the body can fight it?

(I had some discolored numb patches for about a year, but they went away. I never did figure out what they were.)

Apparently the body can fight it on it's own. Just not in every case.

From what I remember the feeling on the patches does not matter so match. The numbness is crucial though, because it indicate nerve damage.

Let me ask someone with more experience about this and will hopefully be back with an answer soon.

What leprosy laws in Singapore do you consider to be discriminatory? What helps to cure it? I hope all the best to you!

Thanks for your questions and well wishes.

There are still 4 laws today in Singapore. You can look them up here: (Search: Singapore) https://ilepfederation.org/discriminatory-laws/

The cure for leprosy is a combination of antibiotics taken over the course of 6-12 months.

Wow that's long time! Did you have any side effects from taking antibiotics for so long?

I did feel weak and tired for 6 months

Hey Mathias! How did you feel when you were told you had leprosy?

For me it was probably a bit different than for most people. I had already been working in a leprosy reference hospital for about 10 months. I knew a lot about leprosy from my colleagues. However, I also knew about persons affected by leprosy being marginalized in their communities, abandoned by their spouses and other family members, fired from their jobs and so on. It was a mixed feeling. On the one hand, I felt that I was going to be ok. On the other hand I was not sure how people would react to it. It took me about 3 years to be able to talk freely about it. In retrospect, I felt quite a bit of anxiety about it.

Have you heard of Kalaupapa in Hawaii? This is why I know Leprosy has not died out. Located on Molokai it is a leper colony that is only accessible on land via mule train. This is where St Damian practiced.

Also of a grad student that had Leprosy when I was at uni.

I have read quite a bit about Kalaupapa and Father Damian. Many leprosy colonies were established on islands or remote locations. This has added to the stigma.

Might be worth saying out loud: I notice you altering uses of the word "leper".

I assume you consider that term stigmatizing and discriminatory?

I'm glad you picked up on that. We do know that most people use the term for the lack of knowledge of better ones. We say: persons affected by leprosy, or in this case: leprosy colony or former leprosy colony

Hello very pleased to hear from you! A few questions.. I remember reading and hearing about leper colonies where people were cruelly abandoned. I imagine, that that they still remain in some places, unfortunately, as people are misinformed and old stigmas remain.

How does someone come to suffer from it?

How can people who have it be best supported?

And what helps eliminate it? What is a good way forward?

All best to you good person, go well.

Great questions.

Sadly, leprosy colonies still remain in many countries. In some places, they have become villages, although it sometimes carries a stigma to be from there. People are misinformed and old stigmas remain.

Most people are immune against leprosy (more than 95%). It is believed to be airborne and most transmission is probably from human to human. A person that has started treatment is no longer contagious.

Support for persons affected by leprosy needs to be integral. They need to have access to adequate healthcare. They need a good support system. They need to to know about their rights and how to deal with discrimination. The local health system, NGOs, Organizations of persons affected by leprosy can and should play a big part in all of this.

Any persons who has contracted leprosy needs to be treated as soon as possible. We need more resources to go towards research regarding transmission, treatment, complications, stigma, inclusion, among other things. We also need the commitment of governments to take leprosy seriously and allocate the appropriate resources. With the right resources, elimination of leprosy is more than possible.

What are the first/most common symptoms? Thanks for sharing!

Skin patches which are a different colour from the rest of your skin (in brown/black skin the patches are lighter; in light-skinned people the patches are reddish in colour) and with no feeling (meaning that it is numb and has no sensation)

https://www.leprosymission.org/what-is-leprosy/what-are-the-symptoms-of-leprosy/

What symptoms did you experience after your diagnosis? If left untreated too long, what long term symptoms can remain (even after being cured)?

For me it was a tingling sensation in my hand. After some days it felt like my skin was getting to tight for my fingers. If I had not been treated I would have been left with a partially clawed hand with impaired strength and mobility.

Hi, thanks for doing this!

Why do you think there's still such a stigma around leprosy even though it can be cured?

Great question!

Misunderstanding, missing information or wrong information can be factors. Over centuries there has been misinformation about leprosy. The misunderstanding leads to fear. We often fear things that we don’t understand. It is then only a small step towards stigma.

In some communities and cultures there are ancient myths about leprosy being a curse , divine punishment and extremely contagious.

The cure has only been around for about 40 years. The disease is about 4000 years old. Many people still don't know that there is a cure.

(My colleagues Tim and Jannine helped me a lot with this one)

How did you get diagnosed?

I was diagnosed some 11 years ago. At the time I was working in a leprosy reference hospital here in Paraguay. I was diagnosed early, because I was at the right place, at the right time with great and caring health professionals. Sadly, many health professionals don't know how to diagnose and/or treat leprosy.

I read online that it can only be cured if detected early enough. Were you cured?

I am cured. It can always be cured at any moment of the disease. However, if diagnosed late, it can cause lasting impairments and/or consequences.

I'm curious how leprosy differs from its stereotype in media? Is it very transmissible when untreated, they way media portrays? You hear how HIV is a very livable condition for many people who only have to take pills to suppress the disease and otherwise live exceptionally normal lives. Is a similar life available for people with leprosy if they are treated? Or are there untreatable factors to the illness?

I hope you're doing well, and a 2035 end for leprosy sounds amazing! I hope we hit it.

Great question!

Sadly, the negative stereotype is far from the truth, but it continues to perpetuate stigma and discrimination against persons affected by leprosy. It is not very contagious when you have it because the transmission rate is less than 5%. When treated early (like in my case), it has little impact on your life. The problems occur mostly when it's diagnosed late and this is still happening for a lot of people.

Thank you for your well wishes!

I noticed that you are calling it leprosy rather than Hansen‘a disease, which to my understanding was the way to call it in order to avoid the ancient prejudices and misunderstandings about the disease. Why is that?

This is a great and important question. The answer is quite complex.

Many persons affected by leprosy prefer to call it Hansen's disease. However, there is no consensus on this issue of terminology. This has to do with different languages and with the fact that many persons affected don't see terminology as a priority. Many of them are fighting daily to survive, to eat, to keep their family healthy, an so on.

Some of us do believe that it would be important for a significant number of persons affected by leprosy or Hansen's disease to unite and advocate together for our rights and dignity. Some of that is happening already in different ways. I do hope that very soon persons affected can speak with one voice to claim a life of dignity.

How is leprosy treated?

Leprosy is treated with a combination of antibiotics. The treatment is very effective. However, it is crucial that people get early treatment to avoid complications and impairments.

Are they still using thalidomide?

Thalidomide is an excellent drug for treating type 2 leprosy reaction. But it has to be used under very strict conditions, by doctors who are trained in how to use it. Many countries do not allow it to be used. We do need more resources for research into better and safer drugs.

Is there a genetic explanation for being susceptible to infection? Are there family clusters?

If your parents are immune to leprosy, you are more likely to be immune. If your parents are not immune, it is less likely that you are. So the immunity is 'passed down' in the genetic material, not the leprosy. So, yes, we do see family clusters.

Great answer!

What usa leprosy laws do you consider discriminatory?

There are laws regarding citizenship and migration that make persons affected by leprosy inadmissible or not eligible. https://ilepfederation.org/discriminatory-laws/

Are you familiar with the work of Stephen R Donaldson https://en.wikipedia.org/wiki/Stephen_R._Donaldson ? He was raised in a leper colony.

I was not familiar with his work and I just read a bit about him on the internet. I know that you did not mean any harm but we consider the term "leper" discriminatory. We prefer the term "persons affected by leprosy" or in this case leprosy colony.

You look fine in your photo and were treated early. Did you suffer any long-term effects?

Thank you!

I did not suffer any long term effects. I did have some anxiety about people finding out.

However most people are not that lucky. They suffer long term effects in their physical and mental health.

Have you heard of Turkan Saylan? She was a hero.

I had not heard of her and I am reading up on her on the internet now. She seems like an amazing person that had an amazing impact. In the history of leprosy there are many heroes. I do want to point out that the unsung heroes are the persons affected by leprosy themselves. They fight every day for their health, their dignity, their families, their communities and for a more inclusive world.

Hi there!

How much has your life changed after getting your diagnosis? Obviously, you wouldn’t be where you are right now without it, but how would’ve your live looked if you never received treatment?

Great question!

I would have a partially clawed hand with reduced strength and mobility if I never received treatment. My mental health probably would have been affected significantly. Perhaps I would have withdrawn from social life.

Over the years, my experience and learning about the experience of others have led me to dedicate more and more time and efforts to advocacy for the rights of persons affected by leprosy.

I’ve read a few dozen replies and I still don’t have much of an idea what leprosy is. Without sending me a link, can you explain what it is?

It is a mildly infectious disease that affects skin and nerves. For a longer answer, see Ambala_1874's reply below

Hi Mathias. As you say, leprosy is an ancient disease. However, it is still a disease we see in 2022. How did you feel when you were diagnosed?

It is an ancient disease and that is part of the complicated part. It carries the weight of thousands of years of negative images and stereotypes. All of this came to my mind when I was diagnosed. I had also been told by people how they had been rejected by their communities and abandoned by family members. Even though I knew that I would be cured, I felt a bit of anxiety about the reaction of other people if and when they would find out.

Do you take thalidomide?

I have not taken thalidomide, but some persons affected by leprosy do take it to treat their reactions. I do know that the use of thalidomide has been controversial, but for some persons affected it seems to be the only drug that gives them relief. We need more resources for more research into better drugs for reactions.

Hello Mathias,

Living in Belgium, we were thought about the work by Father Damien in school combined with a serving of stereotypical views (talking roughly 30 years ago, things may have changed). As an adult however I must admit that I still have the same stereotypical view of the disease. ie: Leprosy leads to people losing limbs, blistering skin, super infectious, etc...

How does the disease compare to the stereotypes? Is there much truth to them, or is it more a case of sensationalism and misinformation?

Sadly, the stereotypes are very powerful and they contribute to the perpetuation of stigma and discrimination against persons affected by leprosy. This hurts them in their daily lives.

Leprosy is mildly infectious, limbs do not fall off, blistering skin can happen in some cases (but can also be a sign of other diseases).

you can see more about it here:

https://www.leprosymission.org/blog/leprosy-causes-your-limbs-to-fall-off-and-other-myths-exposed/

If somebody contracts leprosy and is cured, could they be reinfected or are they then immune going forward?

They can be reinfected. It does not happen very often, because leprosy has a very long incubation period.

However, I have heard of people being diagnosed and treated up to 3 times.

Which animal did you catch it from?

I actually don't know where I got it from. There is still a lot of research needed around the issue of transmission. Experts believe that most transmission happens from human to human. It found in armadillos on the American continents and in Red Squirrels in Europe. https://www.leprosymission.org/what-is-leprosy/leprosy-and-animals/

Como podemos mejorar la reinserción laboral de personas que tienen o tuvieron lepra? Porque por el estigma que la gente tiene cuesta conseguir trabajo

Excelente pregunta!

Creo que este tema es complejo. El estado tiene que comprometerse con garantizar los derechos humanos para las personas afectadas por lepra. En ese sentido es importante tambien el trabajo que hacen las organizaciones de personas afectadas en cuanto a la conscienciación y a demandar dignidad y derechos. Las personas afectadas tienen que saber cuales son sus derechos y como exigir su cumplimiento. Tambien necesitamos mas programas de educacion y formacion y de inserción laboral que tengan en cuenta la problematica especifica que se da en estos casos.

You say you have leprosy and you also say you’ve been cured, does that mean the disease is non transmissible after antibiotics but you still carry the disease? Is it like some other diseases in that you always have the “bug” but are not contagious? I guess the idea that you have it and are also cured confuses me. I would think being cured means you don’t have it anymore.

Great questions!

I have been diagnose and cured.

I do not carry the disease and I'm not contagious.

Many people who are cured, still consider themselves persons affected by leprosy.

I've just read / and it was mentioned here, that leprosy can remain dormant for years.

It caused me to reflect on my own experience with MRSA/staph infection. My neighbor across the street just got MRSA last week so it's fresh on my mind.

I'd learned that staphylococcus aureus is just a normal part of literally everyone's skin biome, and unavoidable, and generally non threatening.
Until, most commonly, you get a deep cut (my neighbor) or infected ingrown hairs (my experience) and the staph bacteria get under the skin and multiply unchecked.

Or for another comparison, I am among the last generation to get chicken pox before the vaccine was available in my country. I later learned I likely still have the virus, dormant and wholly suppressed by my immune system. In 50 years when I'm old and immunocompromised there's a chance of shingles.

.... mrsa, chicken pox, the question I'm building to is, what are the chances I've already been exposed to leprosy several times in my life, or even have the bacteria on my skin right now, but due to good health nothing is coming of it?

Based on what I know, I would say that the chances are less than 5%. Even less, if you did not spend significant time in endemic areas.

An ex-leper?

We prefer to say person affected by leprosy. I assume that you did not mean any harm, but the term you used is considered discriminatory. It contributes to the perpetuation of stigma.

When you say zero transmission, what does that mean? Is it human to human only? Because as far as I’m aware, at least in my area, some animals carry leprosy, and people who eat those can get it. Are there ways to eliminate it from animal population? I’ve seen a lot of the efforts to eliminate mosquito born illnesses as well, and most of them seem to be pretty expensive and time consuming.

I'm not "the expert" on leprosy transmission, but from what I remember hearing (and understanding) from the experts, OverlanderEisenhorn seems to be spot on.

Are the antibiotics used to treat leprosy expensive or difficult to make? We give antibiotics en mass to cows for farming so I'm hoping we can spare a few to someone suffering from the disease but I work with computers and not medicine so I may be ignorant here.

LonelyGnomes is right. You can also add Clofazimine.

The drugs are actually provided free for the entire world by Novartis.

The issue is to diagnose people as soon as the first signs show up and get the treatment to them. They often live in very remote places.

When was the last time you ate garlic?

I think I eat garlic every day. I love it!

There have been some studies into garlic as a cure for leprosy, but I do not believe that there is any conclusive evidence.

Is that what the Bruce's dad in Braveheart had?

I actually had to google that and apparently it's not clear what disease he had. However, the fact that leprosy is often portrayed inaccurately in TV and movies adds to the stigma. This affects millions of people worldwide on a daily basis.

Are there different kinds of leprosy?

I have heard armadillos can grow leprosy on their shells, which makes me sad because I'd love to pat one if I got the chance.

There are still many questions about transmission. Much research is still needed. Leprosy is only mildly infectious. It is very unlikely for you to get leprosy from touching an armadillo.

Hi Mathias, simple question, what is leprosy?

leprosy is a mildly infectious disease that mainly affects the skin, nerves and eyes

Came here to ask the same thing! The only knowledge I have is the biblical story of Jesus curing those with leprosy.. I think?

This is actually a complex issue. According to science there is no concrete evidence of leprosy in the biblical space and time. The terminology used in Hebrew was a somehow referring to all kinds of skin patches and diseases. Choices in the selection of terminology and in translation and the portrayal and reporting in movies and media have led to association with the Bible.

What we can learn from the Bible and especially from Jesus is that no person should be deemed untouchable and that he made a special effort to reach out to all of those who were being marginalized by society.

Where can we donate to assist with this cause? This would be a good battle to win..

I appreciate your willingness to support!

You can donate to The Leprosy Mission here:

https://donate.leprosymission.org/

What is your favorite brand of maté? Half kidding but thanks for doing this! Very interesting. I wish you lots of healing!

I'm drinking Pajarito Mild mostly now, because it goes easier on my stomach. I'm mixing in some dried herbs and some herbs from our garden. Thank you!

Is there any evidence of people contracting leprosy from being in contact with armadillos?

Yes, about 1/3 of annual new cases in the USA are likely linked to the armadillos (~60-100/yr). Armadillos mostly carry the 1-3 unique strains of Leprosy; so they have confirmed connections by DNA strain typing. While around 1 in 5 American armadillos has Leprosy, less than 1 in a million people per year develops Leprosy in armadillo range (~South East USA). Most say they haven’t had any contact with an armadillo. However, Leprosy bacteria can persist for weeks in soil and likely gain entry via wounds and skin abrasions. Armadillos like to root around in the soil for snacks.

Response from my colleague Deanna Hagge, head of research of The Leprosy Mission International

If it's curable then how do you still have leprosy?

I don't have leprosy anymore. I have been cured.

Many of us still consider ourselves persons affected by leprosy after being cured.

If there would have been a leprosy vaccine, would you have taken it?

Why or why not?

I don't know. Perhaps my parents would have had to decide that.

We need more research with regards to a leprosy vaccine

I am glad you are cured 👍. How did you got it?

I do not know how I became infected. Leprosy has a very long incubation period (up to more than 10 years). I have asked myself this question, but I find no answer.

Do you not think some of the laws you describe as discriminatory are actually just sensible?

e.g. Pakistan Fish Inspection and Quality Control Act, 1997 Pakistan Topic/Keyword Employment Description No Person who is suffering from leprosy, tuberculosis, polio or such other contagious diseases, shall handle, carry or process fish or work in a fish processing and packing plant or establishment

Surely that’s just common sense?

This law seems to be based on bad science. There is no reason a person affected by leprosy should be prevented from doing any job. In the case of leprosy, a person who has been diagnosed is also treated. Once treated, a person is no longer infectious. There is no scientific reason for this law in the case of a person who has been diagnosed and treated for leprosy, therefore it is discriminatory.

I read recently that Thalidomide was discontinued because of liability fears and a "lack of insurance coverage" from those suffering from leprosy.

Have you experienced this and what is your view on it?

Thanks and all the best to you.

I have never taken Thalidomide, because I did not need it.

I do know many persons affected by leprosy who take it because it seems to be the only drug that gives them relief.

Thalidomide is an excellent drug for treating type 2 leprosy reaction. But it has to be used under very strict conditions, by doctors who are trained in how to use it. Many countries do not allow it to be used.

I guess that my conclusion regarding this controversial topic is that we need more resources both for early diagnostics and treatment and for research so that we can have better and safer drugs.

Do you refer to yourself as an ex-leper? You could score so many alms.

I refer to myself as a person affected by leprosy. I assume that you did not mean any harm, but we do consider the term you used as discriminatory, because it contributes to perpetuate the stigma.

Persons affected by leprosy often need to beg, because they do not have access to the labor market. We need governments to abolish discriminatory laws and guarantee human rights and dignity for all persons affected by leprosy

I did some research, but still don't understand the stigma behind the disease. Why would there be stigma??

Great question!

Misunderstanding, missing information or wrong information can be factors. Over centuries there has been misinformation about leprosy. The misunderstanding leads to fear. We often fear things that we don’t understand. It is then only a small step towards stigma.

In some communities and cultures there are ancient myths about leprosy being a curse , divine punishment and extremely contagious.

The cure has only been around for about 40 years. The disease is about 4000 years old. Many people still don't know that there is a cure.

(My colleagues Tim and Jannine helped me a lot with this one)

Have you considered or do you wear a white gold ring a la Thomas Covenant?

Great question!

I don't need a white gold ring, because I took the antibiotics when the first symptoms showed up.

Sadly, there is still a lot ignorance and misinformation out there that prevents people from getting diagnosed and treated early.

Have you read Dr. Brand's memoir, Pain, the Gift Nobody Wants?

It isn't very mainstream, but it's a fantastic resource about leprosy, pain, neuropathy in general (including diabetics). And the guy had an interesting life and his research probaboy affected your life. I recommend it every chance I get.

I have read it and I loved it.

Dr. Brand was an amazing person and an excellent professional. His work continues to have impact all around the globe. I have talked to some people who were trained by him and people who were trained by his trainees. His life and work is an inspiration to many of us.

What is the one disease we have eliminated before?

smallpox

https://www.niaid.nih.gov/diseases-conditions/smallpox

Do you have close contact with armadillos? Or have you had in the past?

Great question! We do have armadillos in Paraguay. I don't think that I have com in close contact with them.

When I was a little girl, I lived in Ecuador. My family and I did volunteer work. We visited lepers colonies many times, some for children and others for adults. I’ve seen with my own eyes what leprosy looks like, which is an experience few people in this day and age have had. I applaud what you’re doing. Couple of questions:

Doesn’t leprosy have a modern name?

What is the one disease that we have eradicated?

How can I physically volunteer in the USA and not just give money?

Great questions!

Since you asked great questions and I sense that you want to help, I will ask you not to use the term leper. I assume that you did not mean any harm, but it is discriminatory.

Leprosy is also known as Hansen's disease. Many persons affected prefer that terminology.

I understand that smallpox is the one disease we eradicated.

You can contact American Leprosy Missions and/or IDEA International to inquire about volunteering.

https://www.leprosy.org/

https://www.ideaadvocates.org/index.html

I know that IDEA is always looking for volunteers to help with translation and logistics in their international meetings. There might be other ways too.

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Sorry, I'm working on it

Why didn't you get the covid shots?

Hi, I did get the covid shots. I was diagnosed with leprosy some 11 years ago.

Speaking of shots: The covid pandemic shows that we need more resources to continue research into developing a leprosy vaccine and other drugs.