Hemophilia in Kenya

Speak Out, Create Change!

Laurie Kelley April 20, 2014
Kenyatta National HospitalIt’s
about time. 
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.

“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.

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. 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.

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.

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.

Emmanuel

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.
Lucy Kago asks a question
Mrs. Mwangi and Stephen
Moline Odwar and Laurie Kelley
John with Laurie Kelley
Simon, Laurie Kelley, Peter
Laurie Kelley with Lucy and son Simon
Peter, Maureen Miruka, Jovan Odwar

Kenya’s Maasai: Do They Have Hemophilia?

Laurie Kelley August 29, 2011





I’ve been back almost two weeks now from my African adventure, and the Kilimanjaro climb, and my toes are still healing! One of the great privileges I find when I travel to Africa is the chance to meet and chat with the Maasai. The Maasai are an ethnic group of semi-nomadic people who live in Kenya and northern Tanzania. They are among the best known of African ethnic groups (which the Kenyans call tribes). You can’t miss them with their beautiful red cloth (indeed, “Maasai” means red), elaborate beads, braids, spears and daggers. They tend to be tall, reed-thin and love to jump super high in ceremonial dances. They live out in the savanna, in circular villages (which you can see from an airplane!) called bomas. Their culture is based on cattle: cattle is their currency, their food, their livelihood, their everything. They speak Maa, and many can also speak Kiswahili and English. There are about 840,000 Maasai in Kenya. Quite a few visited the Keekorok Lodge, where we stayed for three days after our rigorous climb.

Indeed, as soon as I stepped off the bus that brought us to the Lodge after a quick 5-minute ride from the dirt airstrip, I saw a Maasai waiting at the front lobby to greet us. It was Daniel! I met him last year during my visit. We had a wonderful chat while he was welcoming the other guests. We also caught up later that evening, after the Maasai came to the Lodge in full force and sang, or rather chanted and whooped, around the dinner table! The Lodge pays them to come and entertain the guests. They sing, do their walking/chanting, and then go outside to do the leaping that really is their trademark. They all try to outdo one another with their leaping. I learned that whoever jumps the highest attracts the most girls!

They can look very ferocious, and indeed, one of their rites of passage is to kill a lion. Around age 18 or so they are expected to become warriors, and to do this they must have several things done. One is to kill a lion with a spear. When I mentioned to Daniel and Lepapa, another Maasai I met last year, that we are taught to fear lions, they both looked at each other and smiled knowingly. “There’s nothing to fear from a lion,” Lepapa said. “Now Cape Buffalo, that’s an animal we fear.”

Another rite of passage is circumcision. This is also usually done at age 17, as part of a group. The young warrior-to-be is expected to not make a sound when then circumcision is made. This is how he shows his bravery. With me in this discussion was Julie Winton, a nurse with BioRx, who had made the Kili climb. We both naturally wanted to know if there was any prolonged bleeding. With a population of 840,000, there is a good chance that the Maasai have someone with hemophilia. In fact, I recall in a previous visit to Kenya, maybe in 2001, I met a Maasai who had hemophilia, though he lived in the city and not in a boma.

As fierce as the Maasai are, they are really gentle, very soft-spoken people. Quietly, Lepapa said, yes, there are some who bleed excessively. What is the reaction of the elders, and those conducting the circumcision?

“They would say it’s a curse,” Lepapa acknowledged.

Julie explained about blood clotting, and that this wasn’t a curse. The two young men were very interested but explained the elders tend to be more superstitious. Obviously Daniel and Lepapa are more educated and have more experience with the world than perhaps some of their elders. Still, Julie and I thought how fascinating it would be to find a Maasai with hemophilia, and to try to bring care to them.

A huge challenge for many of the Maasai is that they live far into the savannah, and not near any major town. There is often not even a medical clinic for routine problems like broken bones. A clinic is something Daniel’s village needs, he noted.

It was a very interesting meeting of cultures; the young warriors (although Lepapa has admitted he didn’t kill his lion yet, and “..really have to in the next two months..”) were curious about our work with hemophilia, and Daniel’s eyes popped wide when he saw Julie’s iPad. He has seen them before, but hers had pictures of cows. Julie lives on a cattle ranch! The topic switched from hemophilia in Maasai circumcision rituals, to artificial insemination and calving.

That night we celebrated our climb by dancing with the Maasai.

Great Movies, Which Showcase the Maasaiq

Mountains of the Moon

About Irishman Richard Burton (Patrick Bergin) and Englishman John Hanning Speake’s (Iain Glen) exploration of the African interior via Tanzania in the mid-1800s to find the source of the Nile, and how their friendship unraveled as a result. Incredible story. Stylish, action-packed, thought-provoking, and true. 1990

The Ghost and the Darkness

True story: In the 1800s, Irishman John Patterson (Val Kilmer) is chosen to build a bridge for the new railroad in Kenya. Work is delayed when two lions break all natural instincts and become serial man-eaters. Nicknamed the “Ghost” and the “Darkness” by the African workers, everyone lives in fear of their reckless killing. Up to 100 were killed, and Patterson seeks to kill them himself, but soon enlists the help of a lone hunter (Michael Douglas) who brings in the Maasais. Great ending, not to miss! Lush, beautiful film, score by Ennio Morricone, but adventure packed and intense, like an African “Jaws.” 1996

Kenya Day 4 Thursday Murang’a

Laurie Kelley August 17, 2011

We achieved our dream: our team summited Kilimanjaro on Wednesday morning, August 10, at 6:54 am, and raised over $52,000! I’ll give a detailed blog about that but let me finish up with Nairobi first.

We were thrilled to hear that Eric Hill, president of BioRx and a sponsor, and his 14-year-old son Alex were finally arriving in Nairobi this morning, August 4, at 6:30 am. Their flight Tuesday was delayed in DC, which caused them to miss a connection, then they spent a day or so in Europe waiting for another flight to get out. The worst part is that their luggage containing their climbing gear disappeared! All the climbing gear needed for Kilimanjaro was in limbo. We thought they must be tired, and we had a full day of family visits ahead out in Murang’a, about a two-hour drive from Nairobi. Amazingly, they wanted to go straight from the airport, meet us at the hotel and come with us.

They were in for an amazing day. After introductions to Maureen Miruka, president of the Jose Memorial Hemophilia Society-Kenya, and Paul Kamau, person with hemophilia who also works for the JMHS, Isaac and Adam, young men with hemophilia and volunteers, Jagadish, who has a son with hemophilia and is a board member, we all piled into the van and headed out. With us: Julie Winton, RN, of BioRx; Kara Ryan (20), medical student; Alex and Eric Hill, Jeff Salantai (31), person with hemophilia, of BioRx; and my daughter. Battling thick Nairobi traffic, we reached Murang’a in two hours and first stopped at the Murang’a District Hospital. Driving up the red clay road and driveway, this was our team’s first look at a county hospital in the developing world.

Murang’a is where a whopping 80% of the JMHS’s hemophilia patients reside. Maureen and her team have done exceptional outreach to locate the patients. We met with Dr. Charles Kigo, chief of the hospital and Dr. Nguyo, who treats the hemophilia patients, and they were amazed to meet Jeff Salantai, who has hemophilia and is healthy, physically fit and strong. Dr. Kigo kept eyeing him up and down in amazement. Jeff shared his treatment regimen and lifestyle. We also presented the doctors with a gift of much-needed factor.

We toured the wards and were able to see the conditions of rural healthcare, a place where 40% of births still happen in homes. The waiting room is outside, with bench seats, protected from the elements only by a tin roof. There is a nice neonatal ward, which is nonetheless in need of a new paint job and incubators for preemies. One hemophilia patient was admitted, Zakayo, who I wrote about in April 2010, when I visited him in Muthare, the psychiatric ward in Nairobi. The poor young man had been traumatized by rioters, and admitted. Now, he was in the county hospital to treat a bleed. Still, he needed a few more tests before being released, which he could not afford. We gladly paid the bill to get him released the next day and return home.

Next stop: Peter’s home, my second visit here. Peter is Zakayo’s brother, and also has hemophilia; he looked great on this day. His home was just a quick ride up a dirt road from the hospital. Our team sat with Peter and his mother to hear how they cope with hemophilia. They were able to look about and see their poverty: a small, two room home for four adults and one child. No place to cook; the mother must cook outside in a pot. They own a bunk bed, an old couch, a small table and chair set, a bookshelf and one bed for the mother. The mother is single and pays heavily for rent and electricity. She cannot afford these things. Some days she cannot feed her children. And she must look for odd jobs because she cannot hold a steady job; the boys require too much care. How will she live? We gave her some money to help her stay solvent, pay her electricity bill in arrears, and vowed to help more.

The images of poverty continue to assault us as we moved on. Next stop: Stanley.

I met Stanley in April 2010. He was in a new location now, again a short drive from the hospital but situated off the main road, on a dirt road and down a dirt path. There’s no electricity or plumbing. They use candles, and an outhouse. Stanley has a small “farm”: one cow and some vegetables. He told us about how difficult it is to farm with joint contractures. He wants to start a business, being a street vendor selling shoes. It would cost $400 to get started, to purchase the initial inventory of shoes, and Maureen and I immediately considered him for our new micro-loan program. Our team was able to ask questions about his treatment, bleeding episodes, and life day to day. His wife is pregnant with their third child. This was an eye-opener for our team, to truly see how the other half lives. Hemophilia in such a place can be a death warrant. Julie immediately saw the need for home infusion, something that is unheard of in most developing countries. Our goal will be to break this mindset and get as many patients as possible on home infusion. We presented Stanley with his Save One Life money.

Alex began handing out candy to the many children who gathered to see the strange parade of foreigners, and they giggled and jumped with excitement! The children followed Alex and the team right up to the van windows, hoping to catch more.

Last stop before heading back to Nairobi was at the house of Virginia, Paul’s aunt. She remembered me and greeted each of us as if we were long lost family members! We all got a kick out of her enthusiastic hugs and megawatt smile. This is a beautiful lady with an incredible face etched with character. Again, the extended family lives in a jungle or forest: dirt floors, no windows, and no electricity or plumbing. They farm a few vegetables. The biggest shock was seeing little Derrick, who has a sponsor in the US. Last year’s photo showed an adorable little two year old with hemophilia. Now, he had suffered a fall, hit his head, and had a massive swelling on his forehead. Luckily, Derrick is well cared for by the JMHS, and has been receiving treatment. But with no car, no public transport, families like this are stranded! Dr. Michael Wood, founder of AMREF, the Flying Doctors of Kenya, once said that in Africa, you cannot wait for patients to come and see you; you must go see them or they will die. This is the foundation upon which Save One Life operates—we must see the patients, note their needs, and empower them. Home infusion is the only way.

I’m happy to say that all of the patients we visited have sponsors, and their sponsorship money makes a huge difference in their lives. They struggle for every single Kenyan shilling they earn, just to survive. Our dollars improve their lives instantly, giving them money needed for transportation, medicine, food and vitamins. On this visit, our team saw first-hand the difference Save One Life in partnership with the JMHS is making.





Do you want to sponsor a Kenyan child with hemophilia? Please visit www.saveonelife.net! They need your support!

Kenya Day 3: MP Shah Hospital Tour

Laurie Kelley August 5, 2011

Having a good discussion is like having riches. Kenyan proverb

Chilly weather continued in Nairobi, probably about 65 degrees. Jeff Salantai, Julie Winton, Kara Ryan and my daughter were all up by 7 am for a delicious buffet breakfast. Today we stayed in Nairobi, to visit the Health Ministry, the MP Shah Hospital, and the patients. Maureen again met us at the Southern Sun Hotel after breakfast and we set out in considerably less traffic. Within 30 minutes we arrived at the Health Ministry. We were disappointed to learn that Dr. William Maina, the director of non-communicable disease department, whom I met last year, was unable to join us due to a meeting. He did, however, graciously come to the parking lot to say hello and greet the American visitors.



With time on our hands, all dressed up and nowhere to go, Maureen took us to the Westland market to buy souvenirs. My colleagues were all first-timers to Africa, and Africa has a beautiful and colorful array of gifts: from Masai warrior shields in red leather, to stone carved animals, to pottery, beaded jewelry and the colorful Masai blankets made of wool. All at bargain prices! Everyone got an opportunity to bargain the prices, although most Americans are not comfortable doing this. We did have with us Paul Kamau, Adam, Isaac and Jagadish, who helped translate and then negotiate. There were so many vendors, with blankets spread on the concrete, wares displayed, hawking for our attention. Jeff and I decided to visit the vendors in the rear, as they seemed neglected. We laughed that it was like a hemophilia meeting, where the vendors in the front often get all the traffic!

We decided to have a sit down lunch (when traveling to the field to visit patients we often skip lunch entirely!) and Jagadish, who is Kenyan but also Indian, suggested a good Indian restaurant. The food was amazingly good and we relaxed and had many laughs. Our favorite moment was when Julie mistook the jalapeño pepper for a green bean (a green bean, Julie?) and we caught her reaction on film!

After lunch came the real purpose of the day: to tour the MP Shah Hospital and then meet the patients. Dr. Paresh Dave, hematologist, took us on a tour of the beautiful, private hospital, where many hemophilia patients find expert treatment. Julie especially was intrigued with their level of care. The hospital is clean and efficient. When asked what he needed that we could help supply for his hospital, we were surprised to learn that Dr. Dave requested butterfly needles! Imagine. The things we often toss away if they are not the preferred size in our factor box. Julie was proud to relay that Alex (still en route to Africa at that point), age 16, had solicited two pallets of medical supplies for the MP Shah and shipped them, courtesy of his dad, Eric Hill. Though delayed in customs, the shipment was in Nairobi and butterflies were on their way.

After the tour, we went into the lecture room to meet the patients. I was beaming with joy to see so many I had met over the past two years. Flora, a lovely woman whose son Victor had passed away at age 15, just four years ago. Florence Odwar, who we had just visited on Monday, and her daughter Moline, who has VWD; Charles, who I had visited last year at his home, far outside Nairobi, now living in Nairobi and working, and proud father of baby Alvin; Gladys with son Justus and nephew Kevin, who wants to be a doctor. I gave lots of hugs to so many I knew; the Kenyans are truly warm and gracious, and really know how to make you feel welcome!

Dr. Dave opened with a warm and even funny speech about how much they have progressed as a team, and how he will commit to continue to help. Maureen reviewed the history of their society, and complimented her team on their help. She stressed the importance of patient and parent involvement. I also gave a brief speech to remind everyone that our foreign visitors were here to raise funds, so that we would have the money to start micro loans and scholarships through Save One Life, our nonprofit that works at a grassroots level in developing countries.

Flora spoke, Kevin spoke… it was very heart wrenching to hear of the loss of some children, but stunning to know even those who lost children are still working with the society so that other families would not suffer. These include Maureen herself, whose five-year-old son Jose died just four years ago.

Maureen asked Julie, Jeff, Kara and my daughter to say a little something, so each guest got up and spoke. Jeff was very emotional in thanking everyone, as he realized fully his blessings in life compared to those with hemophilia in Kenya. Julie could barely speak as she was overcome with emotion, facing the towering strength and dignity of the parents, despite their losses and suffering; Kara thanked everyone for the privilege of letting them be a part of their lives.

After the speeches, we had tea and snacks, and Maureen and I handed out toys we had brought from the States. Stuffed animals are not common in Kenya, so these were a prized commodity! We also gave away kazoos, balls and T-shirts.

Julie had a brilliant and spontaneous idea: with all the patients present, why not conduct a home-infusion workshop? She simply got to work, and found her first volunteer. Many of the children have very hard-to-find veins, but Julie is a pro! Before she knew it, every patient in the room lined up for an infusion. In fact, we left her there to go back to the hotel to work out!

Kilimanjaro looms in our mind and I was getting a bit nervous not working out, after an intense two months of working out. I hit the gym and gave a good hour of cardio. We joined Julie, Jeff and Kara later than evening for a light dinner to review the remarkable day. “Having the good discussions” by the patients, and the home visits yesterday, have given them all a good slice of how Africans live with hemophilia, their obstacles to care and the culture that keeps patients quiet and uncomplaining.

Yeah, they are in love with Africa. I knew it would happen, as it happened to me, too, long ago.

Kenya Day 2: Return to Simon’s farm

Laurie Kelley August 4, 2011

Nobody walks with another man’s gait. —Kenyan proverb

Tuesday, August 2, was Day 2 of our African odyssey. We were up early to have breakfast in the outdoor dining area of the Southern Sun Hotel. It was very cool, and we ate poolside and had a wonderful breakfast of hot tea, eggs, rolls and fresh fruit. Julie, Kara, Jeff and I reviewed our plans for the day, which involved driving to Nyahururu, over four hours, to see Simon, a hemophilia patient. Despite some jet lag, everyone was excited to have this adventure.

Maureen Miruka drove up around 8, along with a van, and several members of the Jose Memorial Hemophila Society—Paul Kamua, secretary at the society, Adam, and Isaac, all of whom have hemophilia. The biggest problem in Nairobi is traffic, which held us up for almost two hours. We finally broke free and hit the highway, unexpectedly spotting a lovely little herd of zebras alongside the road. The highway was deteriorating and very bumpy. We were jostled around for four and a half hours, until we finally came to Nyahururu. Along the way we passed lush countryside, and had a brief pause at the famed Rift Valley! Everyone admired the beautiful Masai blankets, did a little souvenir shopping and haggling before climbing back in.

Once in Nyahururu, we sought out Simon’s home. I had been here just last year to see Simon, and was really struck with how isolated he was. We climbed the rich red soil road, twisting and turning around every bend, rocks churning under our tires, until we reached his farm on top of a hill.

His farm gives a spectacular view of Kenya, and the sun was shining brilliantly. We piled out, and stumbled our way up the path through his farm. Scampering about were three yellow dogs: a mother and her two pups. One of the pups I easily recognized from last year. Now grown, he remained as friendly as he was last year, though his brother was completely untrusting. Chickens clucked about, and the family gathered around to welcome us.

Simon has a cell phone and texts me now and then, but aside from a cell phone, there wasn’t a single luxury. No electricity, no plumbing. We all used the outhouse, which was actually the cleanest outhouse I have ever used, and I have used many. There is something to be said for simple, optioned-style rural living. I imagine the stars are spectacular from his farm. Still, there is no doubt: Simon lives in total rural poverty.

As we sat down to a homemade lunch of fresh-killed chicken and nutritious mokina, a national dish made of pumpkin leaves, we all asked Simon questions about his knees, health and treatment of hemophilia. His knee remains completely unstable from the deterioration of the joint. Simon is one of the few in Kenya who knows how and is allowed to self-infuse. This is great, because it means he can infuse immediately when he has a bleed, which will spare him much pain and crippling.

As we ate, I looked about his interior: sheet metal roofing (very noisy when it rains), and two-by-fours covered with—get this—stapled cardboard. Very crude, very poor. Yet we ate delicious, fresh food that could have been served in any restaurant!

After lunch came a mug of steaming hot tea. Then a trip up the hill to the outdoor “mountain spring water” which pipes down to an outdoor pump. We can imagine that this is what our American ancestors had to deal with two hundred years ago!

Simon has been asking for a micro-loan so he can start a business, and our Kilimanjaro mountain climb can definitely help him accomplish this. I am really hoping to write within the year to let you all (or “y’all,” as Jeff likes to say) know that Simon got his micro loan and his business is underway. I’m counting on it, and it’s part of what motivates me to climb!

After a lovely afternoon with Simon, his brothers Richard and John, we gathered ourselves together and hit the road. Another 4.5 hours back to Nairobi and we were exhausted. Whenever we thought we were tired or sore, we all thought of Simon, what it must feel like to travel all this way to Nairobi for treatment, when you are also enduring a horrible bleed. It seems inconceivable, and made us silence any complaints. Simon, limping, in pain, still wants to start a business and do something with his life. For a brief time, Simon allowed us that rare opportunity to walk in another man’s shoes. Now we know what he needs—a micro loan—and now we can pool resources to make this happen.

HemaBlog Archives
Categories