My trip to Zimbabwe has come to a close. I am preparing to leave today, with mixed feelings. There is so much hardship here, but so much potential!

Friday was spent mostly in transit. Peter and I traveled together with his family: Laureen, his lovely wife, who shares the exact same name as me; Prince, his 11-year-old son; and Nkosi, his active and mischevious 3-year-old son. The trip was over 4 hours north to Victoria Falls. We traveled mostly in the evening, which is risky as there are animals in this very rural and wild land. We arrived safely and settled in.

Saturday we had quite the day! We began with a helicopter ride over Victoria Falls, the longest waterfall in the world, which creates a natural border between Zambia and Zimbabwe. Laureen and the boys had never flown before, and this was amazing! The boys were just fascinated and so excited!

Then we had a hike through Victoria Falls itself to see this stunning natural wonder of the world. Shadowing us were a troup of monkeys who were quite bold. We also saw deer along the path. The views were many and just indescribable. Vic Falls was discovered in the mid-1800s by British explorer David Livingston.The tremendous water power from the Falls kicks up spray and creates a rain forest all along the length of the Falls.It was hot that day so the "rain" felt great.

Finally we had a night safari through the Vic Falls game reserve. Safari means "journey"in Swahili, and was introduced into the English language by Richard Burton, the famed Irish explorer who charted interior Africa in the mid-1880s. On this journey, we saw elephant, rhino, hippo, impala, zebra, wart hog, water buffalo and tons of bugs. Our guide Mike was fantastic and taught us a lot about each animal, more than you would ever learn on a TV show, and the delicate eco-system that keeps all things alive in their symbiotic relationship. We didn't feel so symbiotic, however, particularly when we stumbled upon a 100+ herd of water buffalo, who stared at us menacingly. Water buffalo are considered the most dangerous animal in Africa. And they stood only a few feet away!

As wonderful as the day was, Peter and I couldn't help but continue to brainstorm ways to help the Zimbabwe Haemophilia Association get organized, raise awareness of hemophilia in the country, secure funds and most immediately, help the children in dire need. Top of our list? Elton, the 17-year-old with the hideously swollen knee. He needs to go to South Africa at once for testing to try to save his leg. We have a massive to-do list when we each return home.

I must end my trip now. But let me thank Peter Dhalamini for his superb assistance all throughout my trip. Peter organized every aspect of it and is well respected and beloved by the hemophilia community here. He has hemophilia, has laboratory training, and is a born politician! He knows everyone and can enlist just about anyone's help. I cannot thank him enough for making this trip so safe, effective and enjoyable. Thanks also to his family for sharing the last leg of our trip together.

Thanks also to so many others: Lenox, Dr. Mvere, the ZHA, Collin Zhuwao, Simba... and everyone who assisted. Zimbabwe is a tough place to live. Food, cash, fuel, foreign exchange, medicine and basic necessities are all hard to come by. But its people persevere with grace and dignity. Gentle and patient as they are, Zimbabweans don't have the luxury of waiting out the ravages of hemophilia, and that is something we are about to change. Help is coming.

(Photos: Victoria Falls; Impala; One of Big Five; How the other half lives)

Labels: Africa Trip 2007, Victoria Falls, Zimbabwe

Zimbabwe is just as beautiful as it was in 2001 when I visited for the second time. Lush, green, and filled with some of the friendliest and most polite people on earth. I arrived in Harare, the capital, late Sunday night after 32 hours in transit. I received a warm welcome from Peter Dhlamini, my colleague and a person with hemophilia. We spent all day Monday visiting the Zimbabwe Haemophilia Association (hemophilia is spelled a la British, as Zimbabwe is formerly a British colony), meeting with many patients and also having a lovely visit with Dr. Timothy Stamps, personal medical advisor to Robert Mugabe, the president, and a member of the Health Ministry.

So what is hemophilia like in Zimbabwe? Try to imagine this: earning about $20 US a month, if you are able to work at all (unemployment rages at 80%); not being able to find gas when you need it; losing electricity several times a day; facing a drought (there go the vegetables you were growing to feed your family); not being able to go to McDonalds', Wendy's or Dunkin Donuts (they don't exist here); indeed, not being able to eat out much at all because there is little food. Not being able to see a hematologist because there is none. Not being able to infuse with factor, because that is also near to impossible to get. I was told today that patients with hemophilia treat almost solely with the factor donations given by me, and that is not much. I tried to put myself in the shoes of Zimbabwean mothers, and I felt momentarily like I was on another planet, cut off, isolated, helpless. The children suffer immensely, and are used to suffering.

Meeting the families was simultaneously humbling and wonderful. We sat around a U-shaped table at the National Blood Service. Every child and young adult has joint contractures. One young man, Dickson, had the most severe case of synovitis in his knee I have ever seen anywhere. He is in immediate need of surgery. Another mother had already lost three sons to hemophilia: she lost twins at age 6 months, another one at age 2. She is left with one son, a lively 10-year-old. He husband left her, for bearing all these "defective" children. So many questions were asked: what to do about dental bleeding? How do we get tested if we suspect our son has hemophilia? Can you detect hemophilia in utero? What do you do when veins don't cooperate? Can you get us butterfly needles? Syringes? Ace wraps? Such simple questions, such great needs.

The meeting with Dr. Stamps gave us ideas on how to get more publicity for hemophilia. Stamps shared candidly that hemophilia is often confused with "pedophilia," and thus many people shun anything to do with hemophilia. The way to counteract that is to promote hemophilia to the public. Stamps also noted how the Ministry of Health is focused on three big medical challenges: malaria, tuberculosis and AIDS. Hemophilia is in the "bottom of the inbox." But this is not to say things are hopeless; through dedicated action and public awareness, things can turn around. This will depend primarily on the ZHA, which is composed of mostly patients.

Sobering, but I love a challenge. I think there is great hope for Zimbabwe, if the rest of the world supports it until it gains momentum and experience. And all that is possible. But wow, Zimbabwe faces harsh economic times. I had a taste of this when we left tonight to try to retrieve some wayward luggage at the airport. We called the airport all day but the lines were busy, or not working. By 7 pm we finally decided to go by car, driven by Alex, father of a boy with factor IX deficiency. En route, we noticed his gas level was quite low, almost out. So we zoomed down dusty roads through neighborhoods cast into complete darkness by power outages, pausing to ask for specific people who know someone who might know someone who could get us just a liter of gas. Mission accomplished: we got a few liters, found my luggage, and returned to the hotel. I was amazed when the lights switched on and the internet worked. You learn to settle for little victories in the developing world, and appreciate luxuries tenfold.

Labels: Africa Trip 2007, hemophilia, Zimbabwe

I am writing this blog a little early as I will be landing in Zimbabwe late Sunday night. This is my third visit, though I have not been since 2001. A lot has happened since then. Check out your news source and see the economic hardships facing the people of Zimbabwe. You can only imagine what has happened to hemophilia health care-- it has collapsed.

Zimbabwe is a gorgeous country filled with incredibly warm, civil people. Back in 1997 I received a fax from a man named Norman Mubaiwe. He had hemophilia and was president of the Zimbabwe Hemophilia Association (ZHA). I was struck by his courage in contacting me for help, and later had the chance to meet this extraordinary man. He had many challenges to overcome, including poverty and an inhibitor. Moved by his perseverance, I pledged to always help Zimbabwe, and though my friend Norman died in 2001, on the operating table, lacking any clotting factor for inhibitors, I was determined to do something so he would not have died in vain.

We held our first camp in Zim in late 2001, and it was fabulous! About 40 children who had never been to camp, never had any real pleasures, attended. They had a safari, a trip to Victoria Falls (the longest in the world), good food and a medical check up. Plus, all the factor they needed, for the first time in their lives.

Since then, Zimbabwe has been largely ignored by the international hemophilia community. With so many needs all around the world, it's hard to pay attention to a country where even the doctors are fleeing, where communication is sporadic, food lines are long, inflation is 10,000%... it seems overwhelming.

I am not sure what awaits me as I head off, but the ZHA and I are determined to have another camp next year. We will need volunteers: anyone interested? Stay tuned and I will write more as the trip goes on....

(Photos: Victoria Falls; Laurie at the first hemophilia camp; the view from camp--gorgeous!)

Labels: Africa Trip 2007, hemophilia camp, Zimbabwe

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.

Labels: Africa, Kenya, Zimbabwe