Kenya Haemophilia Association

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

Jambo from Kenya


It’s with great pleasure and joy that I’ve returned to Kenya, in east Africa, to visit the patient groups and the patients I have grown so fond of over the past nine years. I first arrived in 2001, returned again last year and was eager to not wait eight years before returning again!

Kenya is best known nowadays in America for its elite athlete runners (one just won the Boston marathon last week) and as the ancestral home of our president. But it is very important for hemophilia care as its national hospital has become a training center for many in east Africa. There are an estimated 4,000 people with hemophilia in Kenya, and about 400 identified and registered. Yes, there is a long way to go in providing care, but seeing where it has come in nine years, it has been making steady progress.

I landed late last night after a six hours flight to London, an overnight stay and then an eight+ hour flight straight to Kenya. I was greeted by Maureen Miruka and partner Sitawa, parents of Ethan, who has hemophilia. Maureen founded the Jose Memorial Haemophilia Society to help organize patients with bleeding disorders and to provide programs that address their needs. Jose was Maureen’s first son, who died three years ago that same evening.

My first stop today was the Kenyatta University Hospital, to visit with the chief hematologist, Dr. Walter Mwanda, and the Kenya Haemophilia Association. We had a wonderful meeting and it was exciting to get caught up on the many outreach activities planned, and the ideas of their young president, James Kago, who has hemophilia. What devotion: James just became a father for the first time on Saturday, and here he was, attending to affairs of the state! Our meeting, originally a courtesy call, lasted three hours. We all share a deep passion for helping those suffering with hemophilia in Kenya, and it showed in our bubbling over of ideas and concerns and a pledge to help the KHA and all patients. (Photo: Dr. Wanda and KHA)

Next stop: a visit with James’s new baby girl Tiffany! It’s been a long, long time since I have held a newborn and there is perhaps no greater joy.

Next stop was to meet at my hotel with Maureen and James, and also Geoffrey Mosongo, a young man with hemophilia who has established a new program to help young men with hemophilia get scholarships, finish school and find work. Geoffrey rightly recognizes the needs patients have as they mature to find employment. The meeting was to put heads together to find better ways to create results. I was very impressed with the level of respect and compassion each has for the other, and for each other’s organizations.

The meetings went on well into tonight, for we are ten hours ahead of Boston time.

Tomorrow I go off for a field visit about two hours outside of Nairobi, the capital, to meet with patients in their homes. Stay tuned!

The Kenyan Flag: The black stripe represents the African people; the red stands for the blood shed for independence. The green represents Kenya’s natural resources. The thin white stripes symbolize peace and unity. The central emblem is a shield of the indigenous Masai warriors.

Good Book I Just Read
Pooling Blood by Cheryl D’Ambrosio

This is the true story about two sisters with bleeding disorders (factor V deficiency), as told by their stepmother. It is absolutely compelling; a beautiful tribute to the story of Cheryl’s fight to keep the girls alive, and educate a medical community often ignorant of girls with bleeding disorders. From the opening scene of a blood smeared bathroom, to the blossoming of the girls socially at camp to a near-death experience while on a vacation, the book is a roller coaster of emotions and learning experiences. I started reading it while on the treadmill; three miles never flew by so fast! The book is a testament to advocacy and persistence, and Cheryl is a gifted storyteller.

The only places where the book falls short is when medical or industry related material is shared. The description on page 114 of Bayer’s Kogenate FS production stoppage is completely wrong; the explanation of volunteer versus paid blood donors is outdated and incomplete. The glossary however is very good. Readers should enjoy the story, learn from Cheryl’s experience and prepare to be very inspired.

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