“I found out that I was HIV-positive 11 years ago when I was 59 years old. The diagnosis came about when I fell ill at home and my brothers took me to a hospital in Karatu.

The doctor told me the bad news, explaining that he had something serious to discuss. I thought he would tell me I had an infection that antibiotics could easily treat. However, he said, ‘I’m sorry, but you have HIV.’

After the shock wore off, I had a conversation with the doctor about HIV. He provided guidance, reassuring me that I wasn't alone and that many individuals lead fulfilling lives with HIV. He recommended that I start taking medicine [antiviral treatment].

Every three months, I'd go to the hospital for my medicine. I met many other people there, but everyone was trying to hide to avoid being identified. They'd hide their faces with scarves or pull sweaters over their heads, covering up as much as possible. I was sad because I was hoping to connect with people who shared my condition, someone to talk to who truly understood. But I knew why they were hiding: our community is not always kind to those dealing with our illness. If they know of your condition, you risk being isolated. The only reason I wasn't covering up was because the hospital was far from home and the chances of meeting someone I knew were very small. 

After several trips to the hospital in Karatu, the nurse suggested I get my antiretrovirals (ARVs) from my local clinic closer to home, saving time and money. It made sense, but I worried about being recognized. That’s when I decided to tell my younger brother of my HIV status and luckily, he was very supportive. 

After living with HIV for more than a decade, I don’t care if people know about my condition. I've met my neighbors at the local clinic and when they’ve asked what I'm there for, I’ve always told them the truth. Some are understanding and supportive, while others prefer to keep their distance and that's fine with me.

Recently, the family of a 20-year-old reached out to me, hoping I could talk to their relative who had become a heavy drinker after being diagnosed with HIV. It felt good to assist a young person through such a tough time, even though it had to be done secretly. 

While FAME is not the hospital where I get my ARVs, I’m so grateful for the other support they provide. After my HIV diagnosis, I was also diagnosed with epilepsy. When facing difficult episodes, I rely on FAME for assistance. I've had the opportunity to seek treatment from specialists at FAME [Dr. Michael Rubenstein's neurology clinic] and I schedule appointments with them whenever they visit FAME. I feel comfortable here because the medical staff does not judge me or treat me differently because of my disease. 

On World AIDS Day, my advice to everyone is simple: if you get diagnosed with HIV,  focus on your health. Follow your doctor's advice and take your medicine as directed. Depression and unhealthy habits like heavy drinking can be more dangerous than the disease itself, so take care of yourself.”

Monica's Baby

Monica's little one in an earlier snapshot

Monica's little one today!

Monica's daughter was born prematurely at 27 weeks in a different hospital. After being initially placed in an incubator, she was later asked to remain in the ward with the baby due to the high demand for the incubator. After 17 days, her daughter had lost weight, appeared unwell and experienced breathing difficulties. Seeking more care, Monica brought her to FAME, where she was admitted at 2.2 lbs.

“Baby now weighs 13 lbs! Looking at her, I can’t believe how far she’s come since birth. We spent 40 days at FAME’s Special Care Nursery and when I tell you the medical team fought for this baby, I mean it. There were moments when I just gave up hope, but the nurses never did and that’s why she’s alive today. Every time I bring her for vaccinations, we have to come and say hello to the wonderful nurses who kept her alive.”

— Monica

“Being a premature baby, I feel I have to take care of her on my own; I can’t ask someone else to do it. So, I haven’t been able to return to work. Thankfully, my husband took on a second job to support us and our three older children. I still turn to FAME for support, calling to check if the unusual things my baby does are normal or because she was born prematurely.”

— Monica

Joyce's Baby

Joyce’s baby before

Joyce’s baby today!

Joyce gave birth to her baby at FAME at 28 weeks, weighing only 1.7 lbs. Although this was her third child, everything felt new to her because her two previous children were born full-term.

“Every time anyone asks me just how challenging it is to raise a premature baby, I tell them not very challenging as the FAME team did all the hard work! When I took her home after two months, she finally looked like a normal baby! FAME prepared me well for taking care of her and what to expect. She’s now thriving and such a happy child. I’m grateful for all the help I got and continue to get at FAME.”

— Joyce

Joyce and Monica still keep in touch.

“We talk a lot, checking in on each other’s daughters. Sometimes, we talk about our time at FAME’s Special Care Unit (SCN), sharing memories of when we were sad and never thought our children would survive. Now they’re so big! We plan to meet soon despite not meeting in person due to different schedules. Having her with me at the SCN was a lifeline. When I felt like giving up, she encouraged me and vice versa. We remain sisters for life!”

— Joyce

Read Monica and Joyce's story of meeting each other for the first time while caring for their babies in FAME's Special Care Nursery here.

*The patients' names have been changed to protect their privacy and permission was secured to share their stories. These interviews have been translated from Swahili to English.

Today, on World Diabetes Day, we share the stories of two individuals with diabetes receiving care at FAME's diabetic clinic. We inquired about their experiences in discovering their diabetes, the impact and transformations it has brought to their lives and their perspectives on what World Diabetes Day means for them.

“Don’t feel alone because of this disease”

Marera outside of FAME’s Ward 1.

Last year, at 33 years old, Marera* visited FAME after experiencing symptoms of body weakness and dry mouth. It was then that he received a diagnosis of type 1 diabetes. 

Marera is employed at a tourist lodge in Serengeti, situated 70 miles away from his hometown in Ngorongoro. In pursuit of a brighter future for his wife and three children, he temporarily left them behind in his home village to work at the lodge.

“I live far away from home because that’s where I found a good job with good pay. I need this job to help pay for my children’s school fees and give my wife a comfortable life. The days are very long, but I consider this job much easier than looking after large herds of cattle, which I did when I was younger! That’s why, when I started feeling weak and sick to the point where my manager noticed and called me out for poor work performance, I knew something was very wrong.”

— Marera

Having visited FAME a few times before, Marera decided to return and undergo a full body check-up. He was puzzled by the persistent weakness he had been experiencing for several months.

“When the doctor did tests, he said I have type 1 diabetes and will need insulin for the rest of my life. He told me the symptoms I felt, like weakness, were because of high blood sugars untreated for a long time. My first question was, ‘What is this insulin and where can I get it?”

— Marera

Marera approached his illness with a positive mindset. As he puts it, he 'accepted his fate and collaborated’ with the doctors on the best way to manage the situation.

“I was sure I would get better and go back to work. The FAME medical staff really helped me; they explained what type 1 diabetes is and how to inject and store insulin. I had a small notebook with me and wrote down many things they told me to follow so I wouldn’t forget anything.”

— Marera

When asked about how life has changed since his diagnosis, Marera explains:

“I wouldn’t say my life has changed much. When I have insulin and take my shots, I feel normal, just like before my diagnosis. By taking insulin and sticking to a healthy diet with less salt and more vegetables, you wouldn’t even know I was sick if you saw me working!”

— Marera

What challenges has he encountered since being diagnosed?

“It’s a long journey from my workplace in Serengeti to FAME, about 300 miles. I take insulin for three months and then return to collect more for the next three months. This is challenging because the trip is not only far but also expensive. Although my boss and the lodge management are supportive and allow me time off to pick up medicine at FAME, it’s not always easy for me to make it on time.”

— Marera

This happened recently when Marera couldn't pick up his insulin on time and went a week without it. When he finally reached FAME to get his insulin, his blood sugar levels were so high that he was on the verge of diabetic ketoacidosis (DKA) and had to be admitted to bring his sugars down.

“I’m doing my best, measuring my sugar often with a blood glucose meter and following the doctor’s advice for twice-daily injections. I’m setting aside money to buy a small fridge to store twice the amount of insulin for six months at a time. While the lodge lets me use the kitchen fridge, it’s not always reliable. My insulin sometimes gets thrown away or ruined in the busy kitchen where not everyone understands its importance.”

— Marera

Marera spent a week at FAME before he was well enough to return home. He expresses gratitude to FAME for caring for him and saving his life. When asked if he has advice for fellow diabetics or those newly diagnosed with diabetes:

“I advise everyone to accept their situation and keep going! Follow the doctor’s advice and always take your medicine. Don’t feel alone because of this disease! There is a lot of support available. Personally, FAME has been a great support for me through their diabetes clinic and I’m thankful to them.”

— Marera

“There's a lot more information and support available for people with diabetes”

Mzee Leina

Mzee Leina* is 55 years old and received a type 1 diabetes diagnosis 16 years ago.

“When I found out I had diabetes, I worked as a guard at a tourist lodge because I was big and strong! However, after two of my older brothers passed away one after the other, my body got very weak and I couldn’t do much. Thinking it was just grief, I didn’t go to the hospital. When I finally went, I believed I had malaria and asked for malaria medicine. They did different tests and diagnosed me, but it was too late and the high sugars had already damaged my body. Two years later, I had to have my leg amputated.”

— Mzee Leina

Following his diagnosis, Mzee Leina attempted to return to his job as a guard. However, he was too weak and frequently fell asleep during his shift, lacking the strength to patrol the property and ensure its safety. He was eventually let go from his position. Soon after, his leg swelled significantly, leading doctors to recommend amputation below the knee.

“I wish I had known about FAME sooner. They might have saved me from losing my leg. It was only after the amputation that a friend told me about FAME and their weekly clinic for diabetics. When I came to FAME, I learned how to use insulin. The medical staff advised me on how many injections to give myself every day and what kind of food I needed to eat.”

— Mzee Leina

Mzee Leina encounters numerous challenges after his leg amputation because of diabetes, but he is determined to build a life for himself.

“Since I started coming to FAME, my health has really improved. I can now do some small-scale farming at home, which gives me food and is a source of income as I sell some of my produce in the local market. I am happy.”

— Mzee Leina

Mzee Leina has advice for newly diagnosed diabetics:

“Take care of yourself and go to the doctor if you feel unwell. If I had understood the importance of caring for my health and taking medicine when I was diagnosed, I might have avoided losing my leg. Back then, information was limited and even doctors didn’t know much about the disease. But things have changed and now there’s a lot more information and support available for people with diabetes.”

— Mzee Leina

*The patients' names have been changed to protect their privacy and permission was secured to share their stories. The first interview has been translated from Swahili to English and the second from Maasai to English.

Jane

Jane (left) poses with her mother (right)

Jane* lives in Sumawe, a village within Karatu located only 10 minutes walking distance from FAME. She lives with her single mother and twin siblings, three years her junior.

Jane is now 12 years old, but back in 2019 when she was only eight, Jane suffered a terrible accident. On that particular day, while her mother was outside washing clothes, Jane decided to make herself some lunch. After heating her food on the stove, something unexpected happened. A sudden burst of flames caught her dress on fire, quickly spreading.

“When my dress caught fire, I was afraid of getting in trouble with my mom, so I didn’t shout for help. She had told me many times not to use the stove by myself and to ask her for help, but she was busy and I didn’t want to disturb her. I panicked and started running around the house, but this only made the fire spread faster. Luckily, my siblings entered the house and called for my mom to come and help me.”

— Jane

“All I could hear from the twins when I was outside was, ‘Jane is on fire! Jane is on fire!’ At first, I thought they were just playing, as they were only five years old at the time. However, their cries became louder and louder, so I rushed inside and found Jane in flames. I ran and covered her with a blanket while my mother followed closely with a bucket of water, which she poured on Jane and put out the fire. Unfortunately, Jane had suffered severe burns on the left side of her body, from her legs to her armpit. It was terrible.”

— Jane’s Mother

Jane's mother and grandmother quickly took her to the nearest hospital in Karatu town, where she stayed for a month.

“After a month at the hospital, I ran out of money. I couldn’t afford to pay for Jane’s medical bills and provide food for my other two children at home, who depended on me. Even while she was in the hospital, the medical staff expected me to do a lot of the care for Jane, so I couldn’t leave her to go back home and work. This meant I had no income coming in. When I couldn’t pay the bills anymore, the doctors taught me how to clean her wounds as I had to do it at home. Jane was still very sick and it was clear she wasn’t close to being cured, but I had no choice but to bring her home.”

— Jane's Mother

When Jane's mother brought her back home, she faced many challenges. She had to buy supplies daily from the pharmacy and tend to Jane's wounds. This was very painful for Jane because her mother couldn't afford painkillers, so she felt every touch while cleaning the wounds. Additionally, her mother had to leave Jane alone in the house at times so that she could work and try to earn money for both food and medicine.

Radiant and composed, Jane’s mother beams during the interview, recalling with warmth the transformative moment when her daughter found healing at FAME.

At home, Jane's wounds quickly got infected, causing her a lot of pain. Her mother's best efforts to clean the wounds proved insufficient. Some FAME nurses, who lived nearby, heard about Jane's situation and visited the family. After assessing the situation, they strongly recommended that Jane's mother bring her to FAME urgently. However, Jane's mother explained that she had no money and as much as she wanted to get medical help for Jane, she was unable to do so. The FAME nurses then reported the situation to FAME's Social Worker, Kitashu Nganana, who subsequently visited the family.

“When I visited the family, the situation was very sad. Jane was very sick and it was clear she could die from sepsis if we didn’t act quickly. Her mother had done everything she could to help her daughter. Out of community solidarity and following discussions with FAME management and staff, we decided to sponsor Jane’s treatment.”

— Kitashu

Jane would spend three months at FAME’s inpatient ward.

“Talking about FAME always brings tears to my eyes. You not only saved my daughter’s life but also supported me a lot. FAME staff provided excellent care for her day and night such that I was able to go back to work knowing she was in good hands. When I visited, she was always happy and looked much better. God Bless FAME [wipes tears].”

— Jane's Mother

“Before FAME, my recovery was very hard. My mom had to leave me alone while she went to work and I had no one to talk to. I couldn’t walk or even turn over. I could only sleep on my right side and every time I tried to walk, I was in a lot of pain. I was relieved when I came to FAME. The medical staff were really caring and kind, so I didn’t miss my mom as much as I used to when she had to work.”

— Jane

“I spent Christmas of 2019 at FAME’s inpatient ward, and by then, FAME felt like home to me, so spending Christmas here didn’t bother me at all. The nurses brought us cake and we were all very happy, singing songs. Even the patients who were very ill had smiles on their faces. It was a wonderful day and I still remember it after all these years!”

— Jane

After spending three months at FAME, Jane finally returned to school following an absence of over half a year. After a few weeks of catch-up lessons, she successfully rejoined her class without repeating a grade.

FAME wishes Jane all the best in her life journey and we are proud to have provided the patient-centered care that Jane and everyone in Karatu, Tanzania and around the world deserves.

+The patient’s name has been changed to protect her privacy and permission was secured to share her story. This interview has been translated from Swahili to English.

Sadera, also known as Chief

Two years ago, a 13-year-old boy named Sadera* arrived at FAME, his young life hanging in the balance due to hydatid disease, a parasitic infection caused by a tapeworm. He needed urgent surgery to save his life. Following a month-long stay at FAME, he happily returned home, fully recovered and pain-free. Unfortunately, just nine months later, he returned, battling the same disease. This is Sadera's story.

After completing his primary school exams, Sadera experienced severe stomach pain. Initially, he attributed it to stress, as the exam results would determine his high school placement. However, the pain persisted even after the exams were completed.

“I went to the local clinic and they gave me medicine for five days. However, even after I finished it, I didn’t feel any better. I then tried using local herbs, but they didn’t help either. Finally, I started taking pilipili [Chili pepper], but it also didn’t work.”

— Sadera

FAME's Social Worker, Kitashu Nganana, explained that in the Maasai community, they consider anything with a bitter taste as medicine because they believe the bitterness can eliminate viruses or bacteria. The stronger the bitterness, the more effective it is thought to be.

“I had this pain for many months. It became so severe that I couldn’t stand upright and spent most of my time lying down. I was really sad that I couldn’t go grazing the cows with my father and brothers like we always do. The neighbors heard that I was sick and they came to visit me. It was one of them who told me about FAME.”

— Sadera

As he got sicker, the thought of going to the hospital became more attractive to Sadera. He discussed it with his parents and brothers, who all decided he should go.

“When my parents agreed to let me come to FAME, I encountered a significant challenge. The journey from our village to the bus stop is a three-hour walk and the bus ride to FAME takes four hours. Given my condition, walking for three hours was not possible for me. My brothers offered to carry me to the bus stop, but despite their strength, it was too far. Luckily, my family was able to rent a car that brought me here.”

— Sadera

A happy Sadera (left) poses with his big br0ther (right)

When Sadera arrived at FAME, it was nearly six hours since he had left home and he was unconscious. The FAME team admitted him and, after conducting several tests, diagnosed him with hydatid disease, which required immediate surgery on his stomach.

“When I woke up, I was really confused. I had no idea where I was and everything around me looked strange. However, my brother explained that I had undergone surgery and the doctors believed I would get better.”

— Sadera

Sadera spent a month at FAME. When he was ready to return home, the doctors advised him to always boil drinking water before consuming it. They explained that his diagnosis was due to drinking contaminated water. For Sadera, this was because he was drinking the same water their animals drank, because there was a shortage of clean water in his village and the nearby areas.

“I was so happy when I left FAME. I felt like my old self again. I could stand straight; I could walk! It was amazing and I couldn’t express my gratitude enough to the FAME medical team for the miracle they had worked on me.”

— Sadera

Unfortunately, nine months later, Sadera returned to FAME, experiencing the same symptoms as before.

“I was very sad when I got sick again. I knew the exact reason for my illness - I hadn’t followed the doctor’s advice to boil water before drinking it. I did try at first, but sometimes the water wouldn’t cool down quickly, so I resorted to drinking the same water as the cows when I took them to drink. I regret this very much.”

— Sadera

Sadera spent three weeks at FAME before being discharged to go home. It's been two years since then and he is still doing well and leading a happy life.

“I am grateful to FAME. When I returned, I thought the doctors might shout at me for not following their advice. But they were very kind to me. They explained that I should always drink boiled water at all times so as not to risk my health. Since then, I have only been drinking boiled water and I have been in good health ever since!”

— Sadera

Sadera also had exciting news to share 

“I’ve just been selected as Chief by the elders in my village! I’m now the leader of the boys in my age group. I am very happy and it’s a great honor. They mentioned that one of the main reasons I was chosen is because of my strong work ethic. They said I work harder than all the other boys in the village. This is only possible because of the treatment I received at FAME, which transformed me from being bedridden to being strong again. Thank you.”

— Sadera

Sadera had one last thing to say:

“Just call me Chief!”

— Sadera

“I am thankful to FAME for helping us and many others. When I come across sick people in my village, I always tell them to go to FAME. It’s very far, but it heals people!”

— Sadera's Big Brother

Sadera’s big brother

*The patient’s name has been changed to protect his privacy and permission was secured to share his story. This interview has been translated from Maasai to English.