Hemophilia in Africa

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.

This Time for Africa!

Laurie Kelley July 3, 2011

One month from today I will be in Africa, about to reach new heights, literally. I’m planning a huge mountain climb, up Mt. Kilimanjaro, the largest mountain in Africa and largest freestanding mountain in the world. At 19,340 feet, it’s colossal. We will start at tropical temperatures, and gradually progress up to Arctic temperatures, below freezing. It will take us six days: five up and one down!

Who are we? The nine other climbers are: my 17-year-old daughter; Eric Hill and son Alex; Neil Herson and daughters Britney and Kelly; Jeff Salantai, who has hemophilia, and Julie Winton, a nurse with a son with VWD. Jeff and I just met for the first time last week in San Antonio! He was the first person with hemophilia to climb Mt. Rainier last year!

Eric is president and founder of BioRx, a specialty pharmacy. Jeff and Julie are his employees. Neil is president and founder of ASD Healthcare, one of the largest distributors of plasma derived products and pharmaceuticals in the US.

Our goal is to raise money for Save One Life and its Africa programs. Save One Life is the child sponsorship program for impoverished children with bleeding disorders in developing countries. I’ve been traveling to Africa since 1999, and was the first person from our international community to travel to Kenya, Ghana and Tanzania. I’ve also been to Zimbabwe four times and hope to return again soon. We started outreach programs in Tanzania and Zimbabwe to help locate more patients. We also want to start a scholarship program for college age men in Kenya. They are all so lacking in funds, and it doesn’t take much to get them an education. Once they are educated, they have a chance at a better life.

Eric is a sponsor of two children through Save One Life Neil is one of our biggest sponsors at 49 children! Obviously they are deeply committed to our cause.

They must be to tackle Kilimanjaro. Long the focus of lore and legend, Kili is very special. And tough. While not a technical climb, meaning there will be no ropes or climbing gear, it is strenuous. The biggest worry is altitude sickness: migraine headaches that lead to vomiting and lack of appetite. Oxygen levels will be at 50% of sea level.

But I have hope. Chris Bombardier, a young man from Colorado, just returned from Kenya and I think is the very first American with hemophilia to summit Kili! His climb also raised money for Save One Life.

If you’d like to sponsor a climber, please go to our donation page. Please note that 100% of your donation goes to Save One Life and its African programs, and not to cover the costs of the climb, or airfare or anything related to the trip. Each climber pays for his or her own expenses. All funds raised are donated to Save One Life. It’s a huge commitment in terms of time, energy, and money for these climbers. Please give them motivation and support by pledging today!

http://www.saveonelife.net/mt-kilimanjaro-climb.phpa

Interesting Book I Just Read
Break on Through: The Life and Death of Jim Morrison by James Riordan and Jerry Prochnicky

Shaman or madman? Forty year ago today Jim Morrison died of “heart failure” in a bathtub in Paris, of a suspected overdose. His death is being honored around the world by tens of thousands who loved his music and somehow identified with this tortured poet-turned-rock star. It’s hard to see the poet when you read the account here which can make you wince: the drinking, the juvenile antics, destruction of property and disregard for the rights of others, including his own band mates who suffered six long years with their front man. Gifted with a gorgeous voice and even better looks, Morrison relished the role of star, but also sought solitude personally, and respect for his poetry. “The Lizard King” brought the Doors fame and a legacy in rock and roll history, but as much for pushing the envelope as for his lyrics. His on stage antics made him the first rock star to be arrested on stage; he had 20 paternity suits pending at the time of his death; he was banned forever in Phoenix. Now his antics look tame, but in the 60s, this was all new, and dangerous. Morrison took rock where it had never gone before.

Riordan was a Rolling Stone contributor, and interviewed Morrison. But the writing is choppy, perhaps reflecting two different authors’ styles, and references to current events—Vietnam, Charles Manson, Apollo 11—are stuck in the middle of the story, often without a connection, or when there is a connection, it’s contrived. Some of the statements are just ridiculous (No matter how he tried to avoid it, legal trouble followed Morrison [as though he were an innocent bystander] and then in the next paragraph, they relate how he was arrested by the FBI and held in jail for disturbing the staff and passengers on a commercial plane ride). The attempt to view Morrison as a shaman is a bit too serious, verging on hero-worship. Much of the material here seems to be pinched from other sources, though sources are often not cited. So this is not a well written or researched book, certainly not as good as No One Here Gets Out Alive. I prefer drummer John Densmore’s Riders on the Storm the best, for its candid and sympathetic view of a man, Jim Morrison, who vented his deep-seated angers at his audiences, and muted his insecurities through alcohol. What a waste: judging from the Celebrations of the Lizard today, he is still cherished as a star, marveled at for being truly innovative, and listened to with pleasure. He appalled and attracted. The world is ever fascinated by him. Morrison has influenced many rock stars since his brief life ended. And members of the Doors are still touring, as much as ever (I almost went to see Ray Manzarek when he was in Massachusetts in May–so sorry I missed it!) He always said he would be a comet: a brilliant flash, here for a short while, but leaving a lasting impression. How true! RIP, Lizard King. Two stars.

Jambo Kilimanjaro!

Laurie Kelley March 21, 2011

At 19,340 feet, Kilimanjaro is the highest mountain on the African continent and the largest freestanding mountain in the world. And guess what? I am going there in August! I’m actually going to hike it and attempt the summit. Why? Not just because it’s there, but as a fundraiser for Save One Life.

Save One Life is a child sponsorship program for children with blood disorders in developing countries. I founded this 10 years ago to help the poor I saw during my trips overseas. We now have 750 children and adults with hemophilia enrolled, and we hope to add many more! Remember, of the estimated 400,000 with hemophilia in the world, 75% have little or no access to factor. They need our help. And we have a way to help them.

The climb is the brainchild of Eric Hill, president of BioRx, a homecare company, and a sponsor of two kids with hemophilia. Last year he, an employee, and a person with hemophilia, Jeff Salantai, climbed Mt. Rainier. That was a highly technical climb, meaning they had equipment, ropes and crampons. Thankfully, Kilimanjaro is not a technical climb, but it’s no walk in the park! With a team of ten, we will trek for 4 days, hopefully summit on the 5th, and then come all the way downhill in one long day.

Would you like to help us?

Visit http://www.saveonelife.net/mt-kilimanjaro-climb.php

See who is climbing with me! And consider making a donation. Note that climbers underwrite their own travel expenses: so 100% of your contribution will go toward Save One Life’s core services and Africa programs. Please be sure to email us to let us know who you are sponsoring!

Asante Sana (thank you)!

Jungle Photos (www.junglephotos.com)

Great Book I Just Read

Home of the Blizzard by Douglas Mawson

In December of 1911, Douglas Mawson, an Australian geologist, set out Antarctica to explore a 2000 mile long coastline to gather scientific data and search for the magnetic pole. What happened is one of the greatest survival stories of all times. When one companion falls to his death in a crevice, and takes most of the supplies with him on his sledge, Mawson and his remaining companion struggle on. They only had six dogs and one sled with enough food for ten days. Their struggle to survive is surreal; the dogs are reduced to eating the leather straps on the sledges, or even the hair from the reindeer sleeping bags. One by one, the men eat the dogs to survive. And it’s this that led to the demise of Mertz, who becomes delirious and dies. Vitamin A poisoning from dog liver is suspected, but not in this book, as there was no word even for vitamin then!

Alone, Mawson heroically staggers back in blinding katabolic winds, and temperatures of 40 below. How he survived is beyond belief and makes for a gripping read. Mawson is a professor and geologist, and the book is old, so expect some stilted writing and highly technical explanations. But Mawson is one of exploration’s greats and this is a classic. Four stars.