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.
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.
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.
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.
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.
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.
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.
You never know what to expect when you fly into a country you’ve never been to before. Never been to Tanzania before, and I only had two and a half days to assess the hemophilia situation: I mean, what can happen in two and a half days? What kind of time can it afford?
It’s enough time to make history.
I feel as though I have been here a lifetime, and have made lifelong friends. I am so, so proud of the Hemophilia Society of Tanzania and what they have accomplished so far. I admire every single one of them, for their determination, perseverance and compassion. We use these words lightly sometimes, but here, they are personified by Richard Minja, president of the society and whose brother Hepson has hemophilia; by Drs. James and Magesa; by hematology fellows Drs. Mukabi and Stella. It is a complete and humbling privilege to serve with them.
What is hemophilia like in Tanzania?
Imagine no factor concentrate — at all. And now imagine no cryo. Only FFP (for those of your from developed countries who forget what this is, it’s fresh frozen plasma, something used in the US a lifetime ago). And you must travel to the hospital with your child (with no crutches or wheelchairs available; just carry him on your back), which can take hours, as Dar es Salaam, the capital, has terrible traffic jams. You sit and sit in the heat, inching along. Public buses are overloaded, hot and sweaty. By the time you get to the hospital, the damage is mostly done. Many patients travel for days from other regions of the country. Remember, “This is Africa” (if you saw “Blood Diamond” you’ll get it) where not much is done quickly and where roads disappear, and mountains loom, and sudden rains drench you to the skin in a heartbeat.
But it is also a continent of breathtaking beauty, and of people warm and compassionate, for they know suffering, and are patient.
The hematologist here are great; I would trust my child with hemophilia to them at once. But they lack resources. The coagulation machines are broken so they cannot even properly diagnose their own patients. There are only 16 registered patients, when there may be about 3,000 countrywide. Of these, only 8 are confirmed in their factor deficiency. How do you practice medicine under such conditions?
What I loved about Tanzania most: the willingness of the new Society to do what it takes to help patients. I brought a donation of factor with me. Now, Project SHARE had donated factor before, but it actually sat unused in a remote Tanzanian hospital, because the medical staff were afraid to use it. It eventually went to Nairobi, Kenya, for a hospital there to use. When I gave the medical team at the Muhimbili National Hospital in Dar es Salaam about 20,0000 units, they wasted no time. 20-year-old Leonard Shimwella had been in the hospital about a week, getting FFP, which is slowly administrated, for a big knee bleed. Right away Dr. James prepared an injection. Somewhere between the prep and the injection we all realized history was being made: this was the first — repeat, the FIRST — Tanzanian with hemophilia ever to get an infusion of factor VIII within Tanzania. Incredible. Leonard was happy, but his joy couldn’t compare to ours. A barrier had been broken, a new door opened.
And as if that wasn’t enough we had a schedule to visit a family’s home. Faithful HemaBlog readers will know I never visit a country without spending time in the homes of the poor; how else are we to understand their needs?
So Monday evening we drove to the Keko slums, to visit Cecilia, and her 11-year-old son Cuthbert. I met Cecilia the day before, and she is a dignified, beautiful, refined woman. I imagined she lived in a nice flat, simple and sparse, but clean and well maintained.
Oh no. Her home is in a true slum, and here is what it looks like: dirt roads, with potholes brimming over with muddy rainwater; loud music blaring; people walking about; mosquitoes nipping our ankles (malaria is a #1 problem here); blocks of concrete, and rocks of all sizes obstructing the path; alleys and dirt squares; fear of being beheaded by the wire clotheslines strung everywhere, unseen in the dark; rivulets of muddy water streaming away. Total blackness… moonlight reflecting off the tin shanty roofs, and the stars overhead bursting with brilliance. I found myself staring in sadness and then awe. What does it take to live in such a place?
The slum turned out to greet us. And so did Cecilia and Cuthbert, and Cecilia’s sister Rose. You can’t imagine how three people live their lives in an 8′ by 8′ dwelling with no ventilation, shower, plumbing, or privacy. The lack of privacy alone might drive you mad. But there we were: Richard Minja, Dr. Zebediah Tilia, who is a friend of the family; and me. I took photos and then notes as I heard how Cecilia’s husband left her and his child; she is now a single mom with a child with hemophilia in a country with almost no care, earning about $3 a day (and that’s gross; there’s still rent and food and transport to be paid). And there was Cuthbert, with an active bleed. Dilemma time: what would you do?
Well, you infuse. And you go down in history a second time in a day for giving the first home infusion to a child in Tanzania. Does it get better than this?
I take no credit: Dr. Tilia did it all. How he found a vein in a dark-skinned child in the semi-dark is beyond me, and on the first stick! We were thrilled beyond words! Of course, Cuthbert was not so happy; it hurt!
Cuthbert really didn’t care a whole lot for me until I showed him my camera, and like all kids, he cracked the digital code pretty quickly and began snapping photos, smiling from ear to ear. We kidded and joked, and I asked Cecilia, how did she stay so lovely looking, when there was no place to prepare and nothing to prepare with? Dignity and beauty come from inside and one need only look at Cecilia to know this.
Stumbling back to the car, up cinder blocks, balancing on stones so as not to step in the treacherous puddles or twist an ankle, we happened upon a group of slum children who were delighted to see an American. They whooped it up, cheered and we all high-fived. I was passed an adorable one year old from a child of six, and cuddled him as the children war danced. It was glorious.
History made, and the start of something great in Tanzania, for we did more than infuse a child or two: we broke a century of tradition, of defeat, of mindset. As Dr. Tilia said at the meeting we had earlier: “This is a dream come true. This is a new future for Tanzania.” Changing mindsets is one of the most difficult things Hemophilia Leaders face, but it was done. Tanzania may not have much now, but they have one thing in their favor: a group of dedicated and young society members, not afraid to change the past and forge a new future, making history along the way. Congratulations to Richard Minja and his team!