Hepson Minja

Farewell, Hepson

When I first went to Nicaragua in 1999—the first person from the global hemophilia community to do so— I met the oldest person with hemophilia there. He was only 41.

Hepson Minja

That was a typical statistic back then. People did not live long with untreated bleeds. Most developing countries had no factor. So it was very surprising to meet a man who never had factor and was doing great into his 50s—Hepson Minja of Tanzania.

I’ve written about Hepson before in HemaBlog, and we just published an essay of his in March. I first met him in Kenya, where he was seeking treatment. Then, I met him later on in Arusha, Tanzania, where he lives, and where you can access Mt. Kilimanjaro, the highest peak in Africa.

I was planning to see Hepson in July, when I would return to Kilimanjaro, and bring him a ton of factor and supplies. But his daughter and brother emailed me this morning to say he was gone. Hemophilia claimed him at last, at age 61. He had a stroke suddenly, and the brain bleed that followed killed him.

Hepson was a remarkable man. Never formally educated, he trained as an electronics repair man in 1983, repairing televisions and radios that had been his source of livelihood ever since. In 1993, his knee swelled for almost three months with extreme pain and no medical prescriptions. After an assessment from the doctors, it was agreed that the leg would be amputated. He lost a lot of blood and after every two days received a blood transfusion of around 26 units. He stayed in hospital for six months.

But nothing stopped him. Hepson ran his own small business, got married and had children. His son John is studying to be a doctor. Now that’s quite a legacy.

Hepson left a legacy

As is this: Hepson was the impetus for his brother Richard to found the Hemophilia Society of Tanzania. Richard had reached out to me to ask for factor for his brother Hepson. I sent some, but also asked Richard to consider starting a hemophilia foundation. He did and we worked together for a few years to get it off the ground.  It was a lot of work. But it worked. The HST is now a member of the World Federation of Hemophilia, and I hope to see them in July! They are also a program partner of Save One Life, the nonprofit I founded in 2001.

So Hepson left a huge legacy. Because of him, there is a foundation in Tanzania for those with hemophilia. Hepson struggled, and he suffered. But he leaves us with this amazing legacy, that will give other children the life he himself was unable to have.

Thank you, Hepson, and rest in peace. Our deepest condolences to your family.

Hemophilia in Tanzania: Meet Hepson

March is Bleeding Disorders Awareness Month, when we highlight the struggles and triumphs of those with bleeding disorders like hemophilia and von Willebrand disease. Many of the stories you’ll read are based in the US. But this month, I’d like to highlight stories from developing countries. While we all struggle with bleeding disorders, those in developing countries have special challenges.

Tanzania is the most populous country in East Africa, with an estimated 62 million people, the 24th most populous country on Earth. Its population is 77% literate, with a low unemployment rate. Infectious disease is a high concern here. The average monthly wage is $157. The national anthem? “Mungu ibariki Afrika”—God Bless Africa.

Meet Hepson A. Minja, from Tanzania

I was born on August 28, 1962, the last in a family of four children. I was born in Tanzania, in the Kilimanjaro region of rural Moshi. My parents were small scale farmer’s, farming the land and selling our produce.

Hepson in 2004

I started having problems with my blood when I was three years old, but nobody knew what the problem really was. When I was seven years old, my legs and other body parts began to hurt and my parents still had no idea what the problem was.  My pain and swelling made me start my primary education very late compared to all the other kids in my village. My family struggled to find out what was really happening to me, so they took me to a witch doctor. But still, no one knew what the problem was .

In 1973 my parents took me to Nairobi, Kenya , to Kenyatta Hospital, where I was diagnosed with hemophilia. At that time there was no medication for hemophilia there,  and due to poor record keeping, my medical records, diagnosis and visits were all forgotten.

In 1980, when I was 18, I was circumcised. I lost a lot of blood which required me to be hospitalized for two months for regular blood transfusions. The doctors in Tanzania didn’t know what the problem was but I eventually got better.

Dr. Mwanda, Laurie Kelley and Hepson Minja

In 2005, at age 43, I fell and broke my right leg. The internal bleeding caused my leg to swell; to avoid infection and gangrene, the doctors suggested that my leg be amputated. The amputated it and failed to understand why my blood did not stop coming out! I had to stay in the hospital for four months for regular blood transfusions.

Things changed in 2006. My brother Richard, who was educated, got in touch with Laurie Kelley on the internet and they started communicating on the best possible way to help me. Laurie suggested I go to Nairobi to visit Professor Mwanda, who headed the hematology department at Kenyatta Hospital. He diagnosed me with hemophilia A, and prescribed factor FVIII. I returned back home and continued with my regular job as a TV and radio repair man with only one leg.

In late 2007, I fell down again and broke my second leg. I was at the regional hospital for a month and that was when the first factor from Laurie arrived. But the local doctors at that time had no idea how to infuse factor VIII, so I was discharged , and sent to Nairobi to visit Professor Mwanda again.  I was at the hospital again for four months, where Laurie Kelley came to visit me, as well as Dr. Assad Hafar of the World Federation Federation of Hemophilia.

Laurie Kelley with Hepson and his family

I was the first person in Tanzania to be successfully diagnosed with hemophilia but there was no factor VIII at the time. With Laurie’s help, my brother Richard and our doctors in Dar es-Salaam, the capital, founded the Tanzania Hemophilia Society, to help everyone in the country with hemophilia.  Richard and his team facilitated trainings for medical personnel, and received an outreach grant from the Novo Nordisk Hemophilia Foundation, to try to identify more people with hemophilia in Tanzania. Based on our population, we could have up to 3,000 patients! But I was the first identified.

I personally would like to thank Laurie for her never-ending support to me and to people with my condition. She saved my life in more ways than one. Sometimes it is hard for me to believe that I am 60 years old now. I’ve spent a lot of time in hospital beds and I could never set aside a retirement plan for me and my family up until now. I still have two kids that depend on me financially. But I can work, and will work hard for their future.

For anyone who would like to help Hepson and his family, contact Laurie Kelley or write directly to Hepson.  

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