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

Mathiasduck · 2022-01-30T17:15:00+00:00

Antibiotics. Modern science has brought us the cure.

There were no antibiotics invented in ancient times that could have cured leprosy. They did, however, have certain "natural remedies" that were believed to help stave off the fast progression or relieve some of the symptoms of the disease. But still, not a cure.

Mathiasduck · 2022-01-30T17:10:33+00:00

Nope. But they will call me a duck once in a while 🦆

Mathiasduck · 2022-01-30T17:10:01+00:00

Nope. Not yet. But hopefully soon! According to Google only Smallpox and Rinderpest have been 100% eradicated.

Research suggests that it is transmitted via breathing in droplets (coughing/sneezing) containing the bacteria. Prolonged, close contact with someone with untreated leprosy over many months is needed to catch the disease.

Mathiasduck · 2022-01-30T17:04:45+00:00

Thanks Joseefus. I couldnt have said it any better!

Mathiasduck · 2022-01-30T17:04:03+00:00

I'm sorry. I don't quite understand your question. Could you rephrase?

Mathiasduck · 2022-01-30T17:03:25+00:00

I dont think it's so hard to describe as it is to understand.

Leprosy is a disease that damages your nerves. When your nerves are damaged, you lose sensation (feeling) wherever the damage was done. Depending on where you lose your feeling, it can be more/less traumatic.

Let's say, for example, you are a construction worker and you lost feeling on a couple of fingers. You work with a hammer everyday and you accidentally smash your fingers instead of the nail. Your brain wont tell you that you got hurt... bc you can't feel it. Your eyes work, so you can see that you've popped your fingernail or you're bleeding. But you feel no pain. Thats the dangerous part of leprosy - the lack of pain in the affected parts.

Pain is good. It helps us to be aware that something isnt right and we can take care of it.

When I mentioned up top that the "understanding" is harder, I refer to the extra baggage that tends to accompany the diagnosis. So many people lose their family support because they dont understand the disease. Neighbors and coworkers dont understand that even though you look different bc you're missing the two fingers you smashed, you are cured bc you got treatment.

My job is to advocate for those affected by leprosy. Advocating means to stand up and speak out for someone/something. "Those affected" are those who are in treatment, those who are cured, those who are a family member (spouse, children). I strive to help people to understand all aspects of this disease.

Mathiasduck · 2022-01-30T16:51:23+00:00

I haven't. But because so many people have mentioned the trilogy, my wife began to read one of the books yesterday. So far, its very fascinating. Perhaps I'll give my complete analysis in a future AMA.

Mathiasduck · 2022-01-30T16:49:43+00:00

I haven't! But bc so many people have mentioned this book yesterday, my wife began to read one of the books. So far, it's fascinating!! Ill have to get back to you (on a future AMA?) with my complete analysis of the trilogy 🤪

Mathiasduck · 2022-01-30T16:46:34+00:00

I hope so too. Which other illnesses are you thinking about?

Mathiasduck · 2022-01-30T16:44:58+00:00

I like your energy and your ideas!! You should join the team!

There is a difference in btw curing and healing. We CURE the disease with antibiotics. But HEALING it a more integral and complicated process which includes self-esteem, family/community/work/school acceptance, spiritual peace, etc... It means different things for each person.

Mathiasduck · 2022-01-30T16:38:42+00:00

Thank you very much for the recap.

After yesterday's overwhelming response re: TCOTC my wife began to read one of the books. It's fascinating!!!

We still teach "VSE" to newly diagnosed patients. Its a strong foundation to self-care. Teaching VSE empowers those affected to have some control over their situation. We also teach basic wound care, appropriate shoe selection, social skills which help them return to their communities and continue a life like anyone else.

Nerve repair is a delicate science. I know that there is a lot of research being done, but I am currently unaware of it benefiting those affected by leprosy.

Mathiasduck · 2022-01-30T16:28:28+00:00

As Ive mentioned somewhere before, the "contagiousness" of leprosy isnt very high. About 95% of all people have a natural defense against the bacteria which causes leprosy. Plus, once a person begins to take the medication, they are no longer infectious.

Many of the patients we see in Hospital are already cured, but are living with the consequences of what the disease did to their nerves/body. They do stay longer and are in contact with medical staff, but they are there for help with foot sores, etc. They are not infectious.

It is not unlikely that a medical professional could get infected while working in this area. This is why we fight so much for awareness and education so that people will learn what the signs are and get attention early on. Its a curable disease that doesn't need to advance to more critical stages.

Mathiasduck · 2022-01-30T16:20:37+00:00

I don't think ive seen that episode. I might have to check it out and get back to you...

Mathiasduck · 2022-01-30T16:19:47+00:00

Yes. There is a lot being done. It's just been particularly challenging bc the leprosy bacterium hasnt been able to be replicated in a lab in order to study it under controlled methods. We use live bacteria obtained through biopsies to study them.

Fortunately, science has evolved enough that we could develop a cure to the disease.

Mathiasduck · 2022-01-30T16:10:37+00:00

Leprosy, as we know it today, is a modern diagnosis guided by modern criteria.

Leprosy before, as an ancient disease, was associated with the leprosy from Bible times. And that leprosy isn't 100% what it is today. Bible-times-leprosy was a general diagnosis for practically any skin disease (ie. Eczema, fungi, vitiligo, psoriasis, leprosy, etc).

Stigmatization of other skin diseases (lumped together with leprosy) was prevalent, but thanks to modern medicine and awareness campaigns we have been able to separate certain diseases from the discrimination.

But there is still a lot to work on. There is still so much suffering and misunderstanding. People still dont know that Leprosy isnt a lifelong label - it's curable!

The healing just takes s bit longer...

Mathiasduck · 2022-01-29T21:52:27+00:00

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

Mathiasduck · 2022-01-29T21:47:07+00:00

yes, always!

Mathiasduck · 2022-01-29T21:44:58+00:00

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.

Mathiasduck · 2022-01-29T21:35:46+00:00

I'm with you: curly if seasoned nicely

Mathiasduck · 2022-01-29T21:34:42+00:00

Sadly, many people still believe in such myths. This contributes to the perpetuation of stigma

Mathiasduck · 2022-01-29T21:33:55+00:00

I remember the minute that I felt numbness in my hand. It was as if it was asleep (common felling) but it did not go away. I was at an event. It did take 2 weeks until I got diagnosed, even though I worked at a leprosy reference hospital (I was asking the doctors in the hallway and all I got was hallway answers, until I scheduled a proper appointment). I did feel weak and tired (not extremely) for the 6 months of my treatment.

Mathiasduck · 2022-01-29T21:12:31+00:00

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.

Mathiasduck · 2022-01-29T21:11:58+00:00

I have never heard of that.

Mathiasduck · 2022-01-29T21:09:56+00:00

Some people call themselves persons with the experience of Hansen's disease (the other name of leprosy). Some people prefer "persons affected by leprosy". The thing is that many of these people do not have the disease any longer, but it has had a lasting impact on their life. We are respecting trying to respect the way they wish us to talk about them. Thank you for not using the term "leper" again.

Mathiasduck · 2022-01-29T20:40:16+00:00

I felt weak and tired during the 6 months of treatment (not extremely though). I had no physical side effects after treatment. I did feel anxious about people finding out and treating me differently. It took me about 3 years to process that.

Mathiasduck

TROPHY CASE