Hemophilia in Zimbabwe

Zimbabwe: The Patients’ Plight

Laurie Kelley November 28, 2007

Zimbabwe is seven hours ahead of Boston, my home, but decades behind in development. Today was a sampling of a day in the life of an average Zimbabwean: long lines at the bank; money inaccessible at the bank; fears of not procuring gas for the car; telephone lines down; blackouts; and no restaurants at which to eat! Worst of all for those with hemophilia, no factor VIII, except for the stash I brought with me to donate. I am amazed at the struggles Zimbabweans must endure daily, and how graciously they accept their difficulties, how they laugh over it, even when they are most worried.

I am privileged to work with an incredible group of people: the Executive Committee of the Zimbabwe Haemophilia Association. Today was our day to brainstorm next steps in the organization. The ZHA has had rough times in recent years, not only from the economic climate but also from internal difficulties. Those times are behind them now, and the new committee is dedicated, hard working and forward looking. Members include: Simbarashe Maziveyi; Collin Zhuwao; Frankie Mutandwa; Doreen Machona; Caryn Thomas; and Peter Dhlamini. Doreen and Caryn are mother of sons with hemophilia, and the others are all young men with hemophilia. All work as volunteers.

First we met with Dr. David Mvere, CEO, and Emmanuel Masvikeni, Blood Procurement Manager, of the National Blood Service, which handles all blood donations and diagnostics for Zimbabwe. The NBS supports the ZHA as much as possible, and today’s meeting affirmed ways they can work together. Many great ideas were generated. Critical, according to Mvere, is the need to get assay kits to be able to diagnose factor deficiencies. The NBS currently cannot diagnose anyone in the country; and sitting just in the next building, at ZHA headquarters, was a young mother with a one year old covered in bruises. The woman’s brother is a diagnosed person with factor VIII; the baby is suspect but there is no way to be sure. Plans were made to try to secure kits for the NBS.

Later in the afternoon, we met at the NBS conference room to discuss ZHA needs, and set goals and prioritize them. We also discussed the option to have a board of directors, changing the constitution if needed, and ways to attract patients to the monthly meetings. The outcome was exciting, and my company has pledged to donate funds to purchase a new refrigerator for storing factor (the current one does not work) and to purchase stationery and business cards so the ZHA can start fund raising and networking. Many more plans were made for later in the year, but small steps first are best.

We then set out for a long ride to the outskirt of Harare to visit patients. This is always the best part of my overseas trips: to enter patients’ homes, meet the family, take in their surroundings, learn first hand what their lives are like. How can I possibly understand their needs with a compassionate heart if I don’t visit their homes? And no matter the country, families are always so honored and happy to have guests. In Zimbabwe, the traditional greeting is to clap hands, and the guest claps back, all the while saying “Makadee,” Shona for “How are you?” It was delightful! In the first home, we met Elton, age 17, and his brother Emmanuel, age 14. I changed my mind from what I previously wrote: Elton has the worst case of synovitis I have ever seen. The photo speaks for itself. He has been like this for one year. A talented student, he has had to drop out of school because he cannot walk. He is in constant pain, but like all Zimbabweans, bears it regally. I was so shocked by his condition, I discussed with Simba what we could do to help him. He needs immediate medical care. But what? To bring him to a hospital, Simba explained, would accomplish nothing. Medical staff cannot to synovectomies here. He would need to travel to South Africa. Most alarmingly, Elton’s lower leg is numb: the hideously swollen joint is compressing his nerves and blood vessels. Without intervention, it would be a matter of time before gangrene might set in. Then his leg would need to be amputated. We vowed to do something immediately to help.

We then visited Doreen’s home, and met with her family, including her son with hemophilia. Charming and chatty, he asked me, “How’s your child with hemophilia?” I was surprised to know he reads about my child from my newsletters. We sat around for a while by candlelight, as yet another black out plunged the neighborhood into darkness.

The weather is lovely, though there are plenty of mosquitoes at night down the dusty roads we traveled. The blackouts create some suspense, as we never know quite where we are driving or walking!

The last home we visited, around 9 pm, was that of the relatives of the Norman Mubaiwe, the ZHA’s founder and my friend. Norman was the first person to contact me, back in 1997, and we became friends and colleagues. Sadly, he died on the operating table in May 2001. How happy I was to again see Daisy, his cousin, and her son with hemophilia. Daisy’s mother was a hoot, boldly asking me “How old are you?” and then sharing how her grandson showed signs of a head bleed one day, and how she turned to my book to diagnose him. She took him to the hospital, where doctors at first did not believe her. Only through her bulldog advocating, and backed by the symptoms listed in “Raising a Child With Hemophilia,” did the doctors back down, and the child was treated. Amazing example of the power of education, even in an underdeveloped country like Zimbabwe, by a simple grandmother in a rural area!

We had many hugs and clapping when we left, and promised to see one another again. Driving away in the dark, back to Harare, back to the comfortable hotel, I thought about how differently we ended our days. While the families are so appreciative, they don’t know how much gratitude I already receive just by hearing how well they use the help we give them. On to Bulawayo!

Building Bridges

Laurie Kelley November 27, 2007

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 hope for Zimbabwe, if the rest of the world supports it until it gains momentum and experience. And all that is possible. But 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.

Off to Africa!

Laurie Kelley November 24, 2007


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)

Why Africa Needs Us

Laurie Kelley September 10, 2007

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 personally, 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. “Jose” 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, email me. For all the boys like Jose still living, still suffering, there is much we can do.

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