Subjective and objective manifestations of leprosy.

Common initial symptoms mentioned by participants included pale skin patches, pea-sized bumps resembling warts, and a tingling or cold sensation in the affected areas. As the disease progresses, symptoms like dizziness, burning sensations, itching, fatigue, loss of sensation, difficulty grasping objects, and loss of sensation resulting in unnoticed injuries and wounds were reported. A key informant described as: “I do not feel pain in my hand or toes, so I get burned by fire or cut by sharp objects without realizing it. Eventually these led to development of ulcers and finally result in amputation of extremities” (A 60 years old male, KII 5, 2024).

Another informant described as: “At the beginning, I felt a tingling sensation and coldness in parts of my body. Then white spots appeared on my face, hands, and legs. My hands became weak and I couldn’t even hold food to eat” (A 75 years old male, FGD 5, P4, 2024).

When left untreated, leprosy led to visible deformities, including claw hands, lost fingers and toes, and facial deformities. Almost all people affected with leprosy and who participated in the study experienced one or more deformities and disfigurement/s. One of the female FGD participants explained her experience by saying, “At the beginning this disease began by forming blister on my fingers. Then it progressed to make my hands feel weak and numb.” (A 45 years old female, FGD 5, P3, 2024).

Perceived cause and modes of transmission.

A predominant perceived cause of leprosy is supernatural causes, including divine punishment, curses, or evil spirits. Due to these perceptions, individuals delayed seeking timely medical treatment and seeking spiritual or traditional remedies instead. Some respondents attributed their condition to God’s will, framing it as a test or unavoidable fate. One FGD discussant explained this as: “I believe I had this disease because God allowed me to have it. It is already stated in both Hadith and the Quran that every person carries this disease in their heart, but only those permitted by the supernatural to show its signs and symptoms become like us” (A 45 years old male, FGD 4, P4, 2024).

Misconceptions and awareness.

There is a deep-rooted misconception about leprosy in the community, particularly in rural settings. As a result, in many individuals, the disease progressed as they sought religious or traditional remedies. One FGD discussant explained as: “As my parents did not know what disease I had at the beginning, they considered as if I had the disease due to allergy. They gave me a lot of traditional medicine. I drank and ate like meat of inedible animals (foon xaddee faa na naachisu turan.) (A 65 years old male, FGD 6, P6, 2024).

Many of the participants believed that leprosy is a non-infectious condition. One informant described this as: “…, Some people say it is from a germ. However, this disease is not germ. It is a gift from God (kennaa rabbiiti). Angels brought it from God and transmit it to human beings” (A 60 years old male, KII 5, 2024).

Another informant explained this misconception as:

“When I was young, there was an elderly woman with leprosy who had lost her hands and legs, and eventually, she passed away. After her death, the local community became very afraid. They believed the disease could be passed on through her clothes and belongings. Because of this fear, they let her house fall into ruins and were even too scared to burn it or her possessions, thinking the disease might spread through the air. “In local language she said: Mana dubartii sanaa gubuuf jedhanii, yoo gubne aarri manichaa dhukkuba juuzaamaa nutti fida jedhanii gubuu dhiisan.” (55 years old female, FGD 6, P3).

Social impacts.

There is stigma and discrimination towards people affected by leprosy remains a significant challenge. Many individuals affected by leprosy face a derogatory word that is linked to leprosy-associated stigma and discrimination. One FGD discussant explained as: “Our community calls individuals affected by this disease as qomaaxaa, qurcii and Juzaamaa” (A 60 years old male, KII 5, 2024).

Stigma and discrimination have detrimental impacts on the emotions of the people. Many individuals affected by leprosy lack hope for life. Even though stigma from people without a history of leprosy is apparent to those affected by leprosy, there is also stigma from within affected individuals themselves, based on the presence or absence of disabilities. One informant explained this as:

“For example, when there is wedding ceremony in the house of the people who had been leprosy patient and get healed from the disease without having any scar on their body, they do not discriminate us.” (A 55 years old female, FGD6, P3, 2024).

Individuals affected by leprosy face rejections at schools. One key informant explained this as: “Even, recently I went to school for some issue and I kept my letter of the request on the table of the chair person. Then the school director kept my paper away by pushing it with pen she had at hand. She refrained from touching my letter of request with her hands” (A 70 years old male, FGD5, P1, 2024)

Inter-generational stigma.

There is a deeply rooted inter-generational stigma associated with leprosy, which affects children of leprosy-affected families. As a result, children of leprosy-affected individuals face social exclusion, bullying, low self-image, and self-imposed restrictions at schools and other social gatherings. A female key informant explained this as:

“Children of people affected by leprosy began to form friendships with children from families with no history of the disease. One day, there was a wedding at the home of those without leprosy. On such occasions, people affected by leprosy and their children were often abandoned, even though they had friendships outside the home.” (A 60 years old male, FGD 6, P2, 2024).

Another informant explained bullying words at school as:

“…there is a difficult problem in school. In some schools, they call our children by saying “Yekokor lijoch”; in Addis Ababa, they call ‘Ye Zingible lijoch’[to mean ginger’s family] due to the shortening and absence of fingers on our hands.” (A 50 years old female, FGD7, P7, 2024)

Self-stigma and concealment.

Many individuals affected by leprosy conceal their condition due to self-stigma. A key informant explained this as: “I completed my treatment without informing my family members (children and wife) and close relatives about my condition” (A 18 years old female, KII 01, 2024). The cycle of stigma starts with delayed care because of self-stigma and perceived stigma. This delay leads to disabilities and visible disfigurement. It triggers social rejection, disrupts treatment, and forces people to relocate to escape discrimination. As a result, the disease progresses and continues to spread. Stigma grows stronger, leading to exclusion, family betrayal, and isolation. Psychological distress, including hopelessness and suicidal thoughts, also emerges. Fear of stigma then prevents others from seeking care, and healthcare workers’ neglect keeps the cycle going.

Psychological effects of leprosy.

Many people affected by leprosy face significant psychological challenges. The psychological impacts of leprosy also impact their children. A female key informant explained this as:

“…. Our children get into fights with others who insult them and often find themselves in complicated situations. For me, if anyone insults me, it means nothing. Why? Because I have the disease and have accepted the challenges associated with it. But for our children, this ends with a severe psychological trauma.” (45 years old male, KII 3, 2024).

Some individuals fall into severe psychological distress and commit suicide or pray to die due to the stigma they faced in the community. One FGD discussant explained this issue as: “One day, I got angry and went to drink ‘teji’ [local alcoholic beverage], hoping it would kill me. I thought drinking ‘teji’ could end my life, but it didn’t.” (A 72 years old female, FGD6, P7, 2024).

Impact on married life.

Leprosy has profound impacts on the marital lives of individuals affected by the disease. As a result, many individuals have marriage arrangements among the leprosy-affected individuals. Often, children of leprosy non-affected families reject marriage proposals from leprosy-affected individuals due to fear of being insulted. A male key informant explained this as: “We prefer to arrange marriages within our community to avoid the stigma and discrimination associated with marrying outside of our community” (A 38 years old female, FGD 7, P3, 2024).

If marriage is not arranged through the marriage arrangement approach, many individuals prefer to stay unmarried. A female key informant explained this as:

“Many of our children here choose to remain unmarried due to the fear of insult because of their family’s conditions. They worry about being disconnected from their families and fear their spouse may not accept them or might refuse to visit their family during holidays or funerals. They say, “I know your family; they don’t even have hands to eat food from a dish.”. Isaan warra biddena kutatanii hin nyaannedha.” (A 32 years old female, KII 13, 2024).

Marriage, which happens between children of leprosy-affected and those from leprosy-free families are assumed to be more likely to end in divorce. One FGD discussant explained this as: “Let alone forming new marriages with someone who has leprosy, many healthy husbands whose wives contract this disease end up divorcing them because of it” (A 38 years old female, FGD 7, P3, 2024).

Another FGD discussant added even: “…, husband of my sister divorced her because of my conditions. Before, my sister had children with her husband. However, when he saw me developing severe disabilities due to leprosy, he divorced her.” (A 70 years old male, FGD 5, P1, 2024).

Leprosy-affected individuals are seen as a threat to their siblings and may be rejected by their parents. Most families force their children who are affected by leprosy to change address. A female informant explained this as: “My family told me to go somewhere else so that my siblings could get married. They fear the fate of my brothers and sisters will not be good if I stayed with them.” (A 42 years old male, FGD 01, P2,2024).

Economic impacts.

Leprosy-affected individuals often face significant economic hardships resulting from systematic rejection of those affected by leprosy in the recruitment process, even in labor activities. One key informant explained as:

“…., Even government organizations do not consider people with leprosy when they seek to hire human manpower for some activities. They exclude us by the criteria. Most of the time physical fitness is considered a criterion. They say in Amharic, “Tenenitu yetemola” when they post vacancy. So, anyone with disabilities doesn’t get job due to those criteria. Rejection by criteria” (A 60 years old male, KII 2, 2024).

Due to the economic impact, access to essential medications for managing leprosy is limited, as the patient could not afford the additional drugs needed to treat the side effects of MDT. As a result, many individuals were forced to discontinue even MDT and later end up with amputations. A female informant explained this as: “The medication used to treat leprosy is free of charge, but there are additional medications prescribed. They said it is crucial for the management of the side effects of leprosy treatment. However, I couldn’t manage to buy the drugs due to a lack of money (IDI, 2024).

Impact on educational opportunities.

Leprosy has a profound impact on educational opportunities. While few students can withstand this insult and complete their education, many others are forced to interrupt their education due to bullying and gossip at school.

A FGD discussant explained this issue as: “Regarding the lack of educational opportunity, I had this disease when I was in grade two. Because of the disease, I had to discontinue my schooling. Most of my classmates are now able to complete schooling and are government employees. As a result, I struggle with daily life and earning income (FGD, 2024).

Another participant described his experience of persistence and being able to complete schooling as:

“…They [children from leprosy families] drop out because other students insult them, calling them ‘qurcii, qurcii.’ [derogatory term to describe someone with disfigurement due to leprosy]. Some students leave school because they can’t stand this insult. I have faced these challenges. Students make fun of us, saying they come from leprosy families. However, I have withstood all those insults and today am working as a teacher” (IDI, 2024).

Due to economic challenges, many children stop school because of a lack of food and other educational materials. A FGD discussant explained this as: “Most children drop out of school due to the lack of adequate food. They end up scavenging food in a dustbin or doing other similar activities to earn a little income. If we had enough food for our children, they would succeed in their studies just like other children,” (FGD, 2024).

Preference for traditional and religious remedies.

Many individuals prefer traditional and spiritual remedies to medical care for leprosy. One female affected by leprosy explained:

“I did not want a health facility following the initial symptom of leprosy. I rather sought out religious healing places, such as holy water and prayer areas. Finally, when I realized that all of these remedies did not work, I went to a health facility and received treatment. Unfortunately, most of my fingers were now resorbed.” (IDI, 2024).

Treatment interruption.

Lack of family support is also leading to treatment interruptions, particularly in children. One FGD discussant described her experiences as: “…then I went to the health facility to seek care, and they gave me drugs. But since I was a child, I have not been taking the medication correctly. As a result, the disease worsened, and my hands and legs developed wounds.” (FGD, 2024).

Another participant added: “…, but since I was a child, around 10 years old, I dumped the medication in the soil and did not swallow it. Had anyone supported me during that time, I could have saved my fingers” (FGD, 2024).

Systemic complications from untreated leprosy.

Leprosy-affected individuals often discontinue treatment and return to religious practices like “tsebel” (holy water) for leprosy management. Discontinuation of medication was a common problem, often leading to worsening disease progression such as severe ulcers and deformities. Untreated leprosy causes loss of sensation, leading to ulcers on the hands and legs during work, which can deteriorate over time and become life-threatening. One female discussant described this as: “When individuals affected by leprosy go untreated, ulcers form on their hands and legs. These ulcers progressively worsen and ultimately lead to death. These ulcers occur when these individuals work. This is due to their loss of sensation. “ (IDI, 2024).

Another participant added: “Due to our late health care seeking, our body became handicapped. If we had sought health care on time, we could have saved our body parts.” (IDI, 2024).

Accessing appropriate healthcare is challenging, particularly for those who have developed disabilities. One in-depth discussant described her life journey as:

“I have suffered from my leg wound for the last 30 years. It improved when I received treatment, but later relapsed. Now, doctors told me it has affected my bone, and I need to be treated in Addis Ababa, as the physician who can perform the procedure is not available in this hospital. Although hospitals that can provide corrective surgery are available in this city, I cannot afford their cost.” (IDI, 2024).

Denial of care at the health facility.

Denial of care and support at the health facility is another challenge faced by individuals receiving treatment for leprosy management. Upon return to the health facility, they are often mistreated by healthcare workers. A key informant explained these issues as:

“Nearly 30 years ago, when I began treatment for leprosy, thieves stole my remaining tablets before I complete it. I reported to the hospital and requested for refill. However, the health care worker at that facility refused to replace my medication, citing that it was my fault. He spoke harshly and treated me without compassion. Without receiving a refill of the lost tablets, I returned to my village and left my fate to God. Unfortunately, my condition relapsed and worsened over time. I ended up in the hospital” (KII, 2024)

Another female key informant shared her experiences as:

“For instance, when I went to the dentist to remove my painful tooth, I got the medical registration number, but the HCWs were not willing to provide me the service I demanded. I was thinking that, hadn’t been disabled, I believe they would have gladly provided the service like others… My child, witnessing the situation, advised me to leave immediately and promised to help me find another clinic for my tooth extraction” (IDI, 2024).

The repeated refusal by multiple healthcare providers to physically examine the patient’s affected body parts reflects a pervasive fear and negative attitude towards the disease. Another informant added:

“The health care providers are not happy touching our bodies. I don’t want to recall the painful moment I experienced. I went to a health facility and waited in line. When I got into the examination room, the first doctor refused to examine me and called someone else in. This new provider looked at my affected body part and quickly left to get another healthcare worker. Throughout this process, I only saw one worker by the end. I felt frustrated. The last health care worker seemed to examine my body parts without care or compassion, only to meet his duty. He prescribed medication without even talking to me, then left to wash his hands. After that, I saw him washing his hands with soap again and again. I remember he had a look of hate and discrimination on his face.” (FGD, 2024).

Health facilities lack a welcoming climate for leprosy-affected Individuals. Many affected individuals are not happy with the care and support they received at health facilities. One FGD discussant described this as: “Even if an affected person visits a health facility, there is no adequate medication, and the health facilities are not as welcoming as they used to be.” (Female FGD, 2024). Another informant added: “There is a knowledge gap among healthcare providers in diagnosing and treating leprosy.” (IDI, 2024).

Another informant explained as:

“…, Recently, I injured my hand and went to hospital. The doctor examined me properly and gave me a prescription to get medication from a private pharmacy, saying that the hospital didn’t have it. When I got to the pharmacy, the pharmacist took my prescription, paused for a moment, and asked my name again. I told him my name, and he threw the prescription paper at me. I cried a lot.” (A 60 year old female, FGD 7, P4, 2024)

Stakeholders involved in leprosy management.

The study participants explained the diminishing number of stakeholders engaged in leprosy management. One of the most notable stakeholders from the earliest time to today is the German Leprosy and TB Relief Association (GLRA). GLRA is not only involved in medical care but also in humanitarian support. A FGD discussant explained the engagement of GLRA in leprosy as:

“It was GLRA that has been supporting us in this rehabilitation center. They provide us with about eight or nine kilograms of teff powder, legumes, pepper, and soap every month. They are also supported by constructing a house and providing some livestock.” (FGD, 2024).

Other stakeholders such as The Leprosy Mission International, the Ethiopian Red Cross Society, the Oromia Social Affairs Office, the Ethiopian Association of people affected by leprosy, Jimma-Bonga Catholic Organization, and other charitable organizations. These organizations often engaged in awareness raising about leprosy, providing educational support for children, facilitating a credit service, and providing skill training.

One participant shared his experiences as: “The organization that supports us is a Catholic organization. I would like to sincerely acknowledge them. Jimma-Bonga Catholic has been supporting us. The social service office also supported us.” (IDI, 2024).

Another informant described the support he received as:

“I lived this way until I turned 15 years old, at which point I fled to my uncle’s house here in Addis. He brought me here and left me. I then completed my medication and am now living in a house built for people discharged from the hospital who have no family or support. I know my family would not accept me if I went back.” (FGD, 2024).

However, participants consistently raised concerns regarding the adequacy and consistency of the support they received. Several noted that the support has diminished over time and remains insufficient in addressing the actual need. One informant explained this as: “The aid given is not enough compared to the number of people affected and the severity of their condition?” (FGD, 2024).

In addition to diminishing support, the informants highlighted a significant governance gap marked by unclear institutional responsibility. One informant explained this by questioning as: “…, it is not even known who has to deal with the leprosy: the association, the health ministry or social affairs?” (IDI, 2024).

Presence of undiagnosed cases and absence of active case screening.

One of the most pressing issues is the continued presence of individuals affected by leprosy who remain hidden at home due to fear of stigma and discrimination. This problem emanates from misconceptions about the disease and lack of awareness. A female informant explained as: “Even now, there are a lot of people suffering from this disease, staying at home.” (Female FGD, 2024).

Treatment efficacy and the importance of timely care.

The study participants confessed effectiveness of leprosy treatment if the affected individuals seek care immediately after the initial symptoms. Early diagnosis and prompt initiation of MDT are essential for preventing the development of disabilities associated with leprosy.

A female discussant explained as: “If individuals affected by leprosy seek care immediately after the initial symptom of leprosy, such as white skin patches at a health facility, it can be cured without developing any disabilities.” (IDI, 2024). Another discussant added as: “…., thanks to God, due to my commitment and determination to seek healthcare at Alert Hospital, today I can at least eat food with my hands. It means I saved my hands.” (IDI, 2024)

Resilience.

Individuals affected by leprosy established their social connections. This includes marriage arrangement within their own community in response to the stigma and discrimination they face from the broader society. This led to the establishment of an own Idir of the community of leprosy affected individuals (Idir is a term in the local language which, in Ethiopia, refers to a traditional community-based mutual support association that can be translated as a ‘self-help group’ or ‘mutual aid association) to support each other economically and socially. One of the participants stated this as:

“Concerning idir, in our idir there is a member who has leprosy and who does not have leprosy. But most of our idir members are the family of this leprosy association. The idir of the people who do not have leprosy may accept us as their members. But since in idir there are responsibilities of doing different tasks that we can’t equally perform with other people, we don’t go to their idir.” (FGD, 2024).

Another participant added, stating: “Now in this leprosy association, we don’t fear each other; we don’t stigmatize and discriminate against each other. We live with full happiness.” (Female FGD, 2024) “Despite being unable to engage in labor like others in the community, individuals affected by leprosy still attend funerals and weddings and participate in different aspects of social life here. We participate in various social activities, without fear of stigma.” (IDI, 2024).

Despite this, there are positive stories where individuals from leprosy-free families accept marriage with children of leprosy-affected families. One FGD discussant shared her experience as: “My daughter married a man whose family has no history of leprosy.” (FGD, 2024)

Another discussant added as: “…, for example, my daughter, who was born and raised here in Shashemene, got married to a husband who does not have the same history in his family. That is something for which I feel proud.” (FGD, 2024).

Enhancing awareness and education.

Community awareness and education are important to address misinformation. One mixed FGD discussant explained this as: “…, therefore, the government should focus on raising awareness for both urban and rural communities through radio and television programs, particularly emphasizing the importance of seeking timely healthcare to reduce the risk of developing disability.” (FGD, 2024).

Another participant also added: “Many of us have suffered amputations due to a lack of awareness about available treatments and delays in seeking care. However, the new generation should have to aware of the importance of timely healthcare for leprosy.” (FGD, 2024).

Improving healthcare access and service quality.

Health system strengthening with a focus on healthcare workers capacity building and improving supply could support efforts towards eliminations. One informant explained this as: “I think that unless HCWs are trained well, sufficient medication and treatment are made available, leprosy cannot be eliminated from this country.” (IDI, 2024).

Another informant added: “Capacity-building training should be given to healthcare providers on leprosy to effectively diagnose and treat leprosy.” (IDI, 2024). Leprosy rehabilitation centers should be strengthened. One participant explained this as: “There should be strong rehabilitation centers for providing holistic support for those who have already developed disabilities.” (IDI, 2024).

Comprehensive support, including psychological care, financial assistance, and provision of assistive devices, and continuum follow-up regarding the treatment, is crucial for ensuring treatment adherence. One of the informants explained this as:

“To eliminate this disease, healthcare professionals need to monitor the progress of leprosy patients and ensure medication adherence. It is more effective if there is phone communication, allowing patients to check on the availability of medications and their adherence. They should encourage patients to take their medication properly to eliminate this disease.” (FGD, 2024).

Engagement of key stakeholders and community leaders.

Engaging key stakeholders such as religious leaders, health professionals, and individuals affected by leprosy was highlighted as a strategic approach to combat leprosy-associated stigma and promote early care-seeking. One informant explained this as: “Every person in the community, government body, and NGOs should have to play their role to eliminate this disease.” (FGD, 2024).

Another key informant added:

“Religious leaders, according to their respective religions, should play their roles in educating their followers about the importance of seeking healthcare when they notice symptoms of leprosy. Furthermore, it is their responsibility to promote the reduction of stigma and discrimination associated with leprosy.” (FGD, 2024).

Another participant highlighted the importance of involving individuals affected by leprosy, as:

“We, those affected by leprosy, can do many things. We are competent and educated. We have a healthy brain. Only our hands and legs have been affected. With support, we could accomplish much through our voices. For instance, I wish to be like birds, flying over the sky and informing everyone that leprosy is curable with medications. No one deserves this suffering afterward.” (FGD, 2024).