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.
             

Speak Out, Create Change!

Kenyatta National Hospital

It’s
about time. Time to speak out and speak up about hemophilia: our community, our
accomplishments, our needs. Speak Out, Create Change was the slogan for World Hemophilia Day, the
April 17 event that commemorates the birthday of World Federation of Hemophilia founder Frank Schnabel, an American who envisioned our global community working
together to improve care.

As
World Hemophilia Day was celebrated in many countries, I chose to spend this
year’s WHD in Kenya, a country I have been visiting since 1999. The nonprofit I
founded, Save One Life, has three programs here—microgrants, scholarships and
sponsorships—each touching directly the lives of many children and young men
with hemophilia.
The
day was organized by the eloquent Dr. Kibet Shikuku, a hematologist at the
Kenyatta National Hospital in Nairobi, and James Kago, a young man with hemophilia. Dr. Kibet welcomed about 70 family
members—parents and children with hemophilia or von Willebrand disease. The day
provided an overview of hemophilia for the press members present, the needs of
Kenya, and words of wisdom for moving forward from this day.
Dr. Kibet lectures about hemophilia in Kenya

“My
prayer today,” Dr. Kibet invoked,  “is
that we walk forward as a group, so we can advance the issues that affect us.
We are one body with different endowed parts. We want to be worthy partners for
better hemophilia care in Kenya.”

One
main goal is to ensure better diagnosis, he added. With a population of 43
million, Kenya should have roughly 3,000- 4,000 with hemophilia. About 400
patients were identified at one point (meaning they came in at one time in
their lives for treatment), but the numbers are not reliable. Only about 50
patients are regular visitors to the treatment center.
Anastasia, lab technician

Other
take aways from Dr. Kibet:

We
Kenyans we have every right to be provided for by things that affect us with
hemophilia.
We
must take charge of our own destiny.
Togetherness
will make us strong.
Speak
with one voice!
We
must lobby the government to support testing and availability of factor.
Speak out… for kids like Emmanuel

Kibet
thanked the WFH and Project SHARE for their support of donated factor. He also
thanked donors in US, especially those who support Eldoret project, like the
Indiana hemophilia treatment center and Novo Nordisk Haemophilia Foundation.

He
also thanked the Jose Memorial Haemophilia Society and showed a photo of a man
who was in bed for four days with a severe bleed. The JMHS provided him with a donation
of factor.
He
noted that there is simply not enough factor; once Kenya secures enough
regularly, then it can offer home therapy.
Emmanuel

This
is a huge point. Kenya is large, and roads can be difficult. Most patients
living in rural villages have no way to get to the treatment center in Nairobi,
the capital, or can afford transportation. I know first-hand as I have
traversed these roads quite a few times. Imagine taking a public bus, crowded,
hot, hours long, with a painful psoas bleed or worse.

James Kago

The audience really responded to this idea and asked about
home therapy… hoping that someday, someday speaking out… will create change.

Kenya has come a long way, and I was very excited to see at
this meeting more change is afoot, all for the best, to create the kind of
unity and one voice Dr. Kibet mentioned.
The informative meeting was concluded and a delicious lunch
served outside on the hospital grounds. I was able to hang out with a few of
the boys I’ve known for years and years: Jovan, Peter, Charles (who has a baby
now!), Emmanuel, John. With all these friendly faces, it was like coming home.
Lucy Kago asks a question
Asante sana everyone!!

Mrs. Mwangi and Stephen
Moline Odwar and Laurie Kelley
Maureen Miruka of JMHS
john with Laurie Kelley
Simon, Laurie Kelley, Peter

Laurie Kelley with Lucy and son Simon
Peter, Maureen Miruka, Jovan Odwar

Why Africa Needs Us

I am planning my next big trip for hemophilia humanitarian work now: Africa. In December I hope to visit Zimbabwe, Kenya and Ghana. I’ve been to Zimbabwe twice before, and Kenya once before. Ghana will be new to me: we started a hemophilia society there last year and I hope to see how it is developing and what help we can offer.

Zimbabwe, as you may know from reading the news, is in dire straits. My program Project SHARE could quite possibly be about the only organization providing factor. As I know many patients there pesonally, I am anxious to return. It may seem like a hopeless case to the world, but when you know people personally, nothing can seem hopeless.

I’ve been wanting to return to Africa since 2001, when I was last there. When I received the email below from my contacts there, I knew it was time to go again. To lose a child when it might have been prevented… it’s a driving incentive to try to solve problems, engage the families, and prevent more loss. This child, Joseph, could have been one of our own sons; but he was born in a country where factor is difficult to procure. He was born just before my last visit, and now is gone, so soon, so suddenly. Read about his case:

Joseph Junior Nyang’wara was born on May 18, 2001 to Ben Onundu and Maureen Miruka. He was their only child. Joseph was diagnosed with hemophilia A, when he was about age one. This condition saw him in and out of hospital on several occasions where he would get replacement clotting factor to stop bleeding. Joseph also had enlarged adenoids that would give him breathing and sleeping problems.

On the April 11, 2007, Joseph had a bleed that led to admission at the Kenyatta National Hospital. He was treated for the bleed and scheduled for surgery to remove his adenoids and tonsils on the 16th April 2007. The surgery, though complicated, was successful and Joseph was discharged from hospital on the April 21, just in time for his child dedication in church on Sunday, April 22. However, on the morning of the 23rd, Joseph developed a bad cough that caused him to bleed. He was taken to the hospital where he was infused with factor. On that same day by afternoon, the bleeding had not stopped. He was taken to MP Shah Hospital and admitted to the ICU to manage the bleeding. It did not stop and it was found that he had developed inhibitors to the clotting factor. The bleeding continued till Wednesday morning, April 25, 2007 when it stopped and there was hope that he had pulled through the worst. But at 2 pm his blood pressure dropped suddenly and he had a cardiac arrest at around 3pm.

The text from his eulogy reads, “Joseph was a very friendly child to both adults and children. He was very prayerful and obedient. He was exceptionally intelligent and as his aunt once said, was a man trapped in a five year old body. Fare thee well, Jose, our guardian angel. Be happy as always and play about in Heaven without any limitation this time. We loved you very much but God loves you more.”

His mother, Maureen, wrote to me in June and said, “I will wait eagerly for you to come and I have made it my resolve to continue to serve others, for Joseph did not go in vain. I therefore look forward to working with you on this front.” Maureen is an inspiration, and potential leader for the Kenya community. If you’d like to help Maureen, and assist in our efforts on Africa, call me at 978-352-7657. For all the boys like Joseph still living, still suffering, there is much we can do.

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