Hemophilia Society of Tanzania

Thirty-Four Years Without Factor: Hepson’s Story

Last week we shared notice about a website where you can share your personal story. That’s for US patients with hemophilia. How about this story? If you felt grateful on July 4 that you live in the US, you certainly will even more so after reading the inspiring and amazing story of Hepson Minja of Tanzania.  This was submitted by Hepson’s son John:



Hepson was born in Marangu,
Kilimanjaro, an area north of Tanzania in 1962. He is married and has four
children. Hepson has never being able to receive any sort of higher education
and he spent most of his early life in treating unhealed injuries, in hospitals
and visiting herbal doctors without the problem being fully known.
After the amputation, in Kenya
Hepson Minja, now age 52, is one of the
few people in Tanzania to have ever lived with hemophilia without treatment for
a long time. It is and never was a smooth journey as he at first never knew
what was wrong with him. The lack of this knowledge compounded with injuries he
got, made Hepson spend most of his life in hospitals or visiting herbal doctors
in search of a solution. Due to his lack of treatment, Hepson never received
higher education. He trained as an electronics repair man in 1983, repairing
televisions and radios and that has been his source of livelihood ever since.
In his frequency
movements to the hospitals, Hepson has usually spent two to six months when
hurt or injured, but surprisingly he was never treated for hemophilia.
One case he remembers is in 1993, when his
knee swelled for almost three months with extreme pains and no medical
prescriptions. After an assessment from the doctors, it was agreed that the leg
was to be amputated. With his condition, 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 with the condition.
Afterwards, Richard Minja, who is  current president of the  Hemophilia Society of Tanzania and
Hepson’s brother, had Hepson, go to Nairobi where, after more tests, Hepson was
diagnosed with hemophilia A. From then on, he started receiving treatment at
the Kenyatta Hospital under Prof. Mwanda in Nairobi, Kenya which is 471 km from
his home in Arusha.
Hepson’s life has had numerous interruptions
as he was required to attend hospitals frequently, but still Hepson with the
help of crutches managed to take care of his family and involves himself in
acts of philanthropy with his meager income such as, assisting his son John in
delivering oral and reproductive health education to the orphaned children, who
lost their parents from HIV/AIDS and hemophilia.
In 2008, Hepson slipped and broke his
only leg. The leg swelled and the pain was enormous. Laurie Kelley sent
medicine from the USA as Tanzania has little experience with hemophilia. The
doctors failed to administer the medicine and he was in the hospital for two months
without getting better. He finally asked to be discharged and sent home. He
later went to Nairobi and it is there that he started using factor VIII
concentrate. Laurie came to see Hepson and together with Prof. Mwanda discussed
on the best way to help Hepson. During this time Hepson was also visited by
Assad E. Haffar, the deputy programs director and regional program manager for Middle
East and Africa for the World Federation of Hemophilia (WFH) who offered
encouragement and advice. This sort of support is what Hepson points out as it
gave him the will and power to fight on.
He was in the hospital for six months
and was discharged after the swelling had decreased, though the bones had not
joined. Since that time he has not been able to walk, but rather uses a wheel
chair and spend most of his life at home.
Hepson today
Hepson’s life has numerous challenges
recently; he has to travel to Nairobi to see a dentist for the removal of some
of his teeth. All the travel and hospital services require fees which he cannot
afford as he has no any stable income; it becomes increasingly hard for him especially
considering he has to pay school fees for his son John who is medical school,
his daughter Margaret who is in secondary school and his other son Edwin who is
in college.
Hepson also faces transport issues as
he is unable to walk, he always wishes he could have been able to move freely
and do things that will help sustain his family fully, his philanthropic activities
and his visitations to hospitals.
Hepson acknowledges that, there are a
lot of hemophilia patients in Tanzania who face challenges due to the lack of
medical facilities and good laboratories for hemophilia diagnosis. Hepson feels
aggrieved and always seek for a way to make the situation better so that, the
patients may do away with all the pains and have a fighting chance to live. Hepson
is a testament to all hemophilia patients that a lot is possible, he hopes to
provide an inspiration to all patients that a way to a normal life is possible.
             

Making History in Tanzania

(Richard Minja, president of new Hemophilia Society of Tanzania)

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.
(Photo: HST Executive. Dr. Stella, Dr. James, Richard Minja, Dr. Mukabi.)

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?

(Photo: Patient and Society meeting)

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 don’t think so.

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!

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