Friday, November 30, 2007
The weather is cool and breezy in Bulawayo, the second largest city in Zimbabwe. It's a city with wide streets, wrought-iron architecture that might remind you of New Orleans, flowering trees and fresh, breezy air. It is also a city with characteristic long queues for the bank and the gas stations, with people foraging for bread and foreign exchange. Zimbabwe is a tough place in which to get by.
We started our trip just yesterday but it seems much longer than that. While waiting in the lobby of the former-Sheraton-now-Rainbow Towers hotel for our ride to Bulawayo, hotel staff began literally rolling out the red carpets. As we quickly assessed, the president of the country was soon to arrive. That would be Robert Mugabe, reviled by western countries as an arrogant and deluded dictator, and here, sardonically referred to as "Bob." How to describe him? Think Enron. There has been no natural disaster in Zimbabwe, no civil or cross-border wars, no Communist rebels; so why the severe economic downturn? Why is it people cannot even find bread to buy? Why is it that people cannot even access their own money out of their own bank accounts? Why have Dunlop Tires and Hertz, among many other corporations, pulled out of this country? Disastrous government policies that penalize its people, who are hard working, long suffering and much too diplomatic and kind. So in strode Mugabe and his retinue, along with the president of Senegal. I snapped a photo of "Bob," now immortalized in my scrapbook, and someday immortalized in the history books alongside others of his kind.
Just to give you an idea of how difficult it is to manage in Zim, look at what we had to do to get transport to Bulawayo. Though we had reservations with Air Zimbabwe, their computers had been down for two days. Unable to call to get through, Peter Dhlamini, my host, friend and one of the founders of the ZHA, visited their offices several times, but the lines were long with other travelers, all trying to get tickets. Eventually, we lost our reservations and tried to hire a car. Well, without Hertz, we only had Avis, which had no cars. Peter finally located a friend, "Luckey," who had a car, and Peter, Collen Zhuwao, the general secretary of ZHA, Luckey and I started on our long journey, in pelting rain, through the Zimbabwe countryside.
But today more than made up for any inconveniences. We started our day by visiting Andrew, owner of a tool shop, and his 18-month old son Michael, who has hemophilia. Imagine having a baby with hemophilia and not having any access to a hematologist or factor! So far so good for them, but as Michael grows, bleeds may increase in frequency. We discussed dosing, factor brands, symptoms and what to expect as Michael grows older. I gave Andrew a copy of Raising a Child With Hemophilia and urged him to read it as Michael develops. Michael had not yet been registered by the ZHA, so we recorded all the information they would need to add him to the registry.
We next visited the Bulawayo branch of the ZHA, located at Mpilo Hospital, and met Ndemba, a young man with hemophilia who mans the office. The clean and tidy office is in need of a computer, printer and refrigerator for factor donations. We also met the CEO of the hospital, and Phineas, the Matron, an energetic man and registered nurse who handles all the hemophilia cases. The reason for this is that--try to comprehend this--there is no hematologist in Bulawayo. None to service the 18 registered patients. Things are so bad in Zimbabwe that there is a "brain drain," with all the professionals and skilled people fleeing the country. Yet the hospital itself is clean and operational, settled in a quiet area, surrounded by beautiful trees and tropical plants.
Last visit of the day was to the home of one child who made a permanent impact on my life: Khumbs. I first met Khumbs on my 2000 visit. A motherless child, he had just had his leg amputated the year before when a knee bleed had not resolved (pooled blood eventually can lead to gangrene). He was only nine years old. I saw him again in 2001 at our first camp in Zimbabwe. Shy, sweet, he followed me around the camp, propelled by his crutches, wanting to communicate though he could not speak English. Smiling was our language. Next year, his father died. Left an orphan, he was faced with living with his grandmother, who lived in a rural village. Living in rural Zimbabwe and having hemophilia could be a death sentence. But his uncle stepped in and adopted both him and his brother, who also has hemophilia. Now both boys are living with their uncle, who also has three other children, and both attend school and look strong and healthy.
As we pulled up to their house, I waved enthusiastically to Khumbs and he waved back. I was so happy to see him again! His framed picture hangs on my office wall and I had never once forgotten him in all the years. He and his brother had grown so tall that I was dwarfed; their uncle has cared for them remarkably well. We had brought with us reporters from the local TV and newspaper and we filmed the reunion, and interviewed with them. Our story will appear on the news in the coming weeks.
I pledged to put both Khumbs and his brother in our program Save One Life, so they can begin receiving sponsorship money. Their uncle only earns the equivalent of $20 US a month as a librarian. He must pay money for transportation to his job, which consumes most of his income. I don't know how they manage; I really don't. Save One Life will effectively double his salary, and give the family the money they need to get the boys to Mpilo for treatment when needed. We enjoyed sitting in their yard, playing with Khumbs' toddler nieces and gaining renewed respect for the very desperate lives of the poor. Somehow, in the midst of chronic pain, poverty, economic collapse, a pompous government and repeated loss, this hemophilia family has managed to keep its dignity and hope.
(Photos: Andrew, baby Michael and Laurie; Bulawayo's stunning architecture; Getting by selling vegetables; Khumbs and his brother)
Wednesday, 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 Tommy?" I was surprised to know he reads about my son 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!
Tuesday, 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 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.
Friday, November 23, 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; the view from camp--gorgeous!)
Sunday, November 18, 2007
Friday night was the first Save One Life celebration in our seven years of operating. Save One Life is a nonprofit organization I founded in 2000 after visiting families with hemophilia in poor countries, and seeing their desperate needs. The program provides direct sponsorships for people with hemophilia who live in poverty. We celebrated a turning point: we finally have operational funds that will allow us to expand our work, and we're sponsoring over 240 children in eight countries.
The event was a social evening, held in Ipswich, Massachusetts, at New England BioLabs' spacious auditorium and entryway. Joining us Friday night were sponsors, donors, volunteers and guests who are interested in learning more about hemophilia and the developing world. After a social hour with cocktails, attendees were seated in the auditorium, where I presented a 30 minute multimedia presentation on my travels to Africa, Asia, Eastern Europe and Central America. The slides were graphic and moved many to gasps. I think we made our point; that children with hemophilia were in need of help now, help that we could provide. Following the slide show we distributed pledge cards, and amazingly, we raised $9,000 in minutes! One-third of the money will be used to fund hemophilia camp in the Dominican Republic; the rest will go to sponsor children currently waiting for sponsorship, and the rest will go to operations.
Our special guest speaker was Fendi Valdez Bisono, a young man with hemophilia from the Dominican Republic and our liaison there. He spoke through an interpreter, Zoraida Rosado, who works for my company. I've known Fendi for 9 years, and watched him flourish as he's received factor, education and training. He hopes to make a difference in the lives of the children he knows, and to be a mentor to them. He told our audience of what it was like to grow up without factor, and how it has left him with arthritic joints and hepatitis C. But nothing slows him down. He managed to get a college degree, married and is self-supporting. He donates a great amount of time to FAHEM, the national DR hemophilia organization. He owes everything to "God, family and FAHEM," in that order. His words were stirring.
The rest of the evening included awards to special donors, sponsors and volunteers, and then coffee and pastries. The pledges made attendees eligible for prizes, including free round trip airplane tickets, three nights at a resort in the DR, and two nights at a local posh historical hotel. Thanks to everyone who made this evening a resounding success, a memorable event and a stepping stone to better health care for hemophilic patients in great need of financial aid.
To learn more about Save One Life, visit www.SaveOneLifeInc.org
(Photos: Board member Greg Williams with guests; Laurie Kelley and graphic designer Tracy Brody, who created the Vision and Mission Poster; Fendi Valdez Bisono with board member Mark Zatyrka and fiancee Sasha Fles)
Sunday, November 11, 2007
It is with great sadness that I inform the bleeding disorders community of the passing of its greatest advocate on von Willebrand Disease. Renee Paper died November 7, at age 49, after an eight week hospital stay following a fall. Renee had been on disability for the past three years, and yet received an achievement award just last Saturday at NHF's 59th Annual Meeting, in recognition of her outstanding life's achievement in helping others with bleeding disorders. People around the world knew Renee, as she traveled and lectured frequently, before her disability. As many of you already know, she had had gastric bypass surgery, loss a tremendous amount of weight in a short period of time, seemed to recover and was doing well, but then, health issues compounded. She had VWD herself, and also battled hepatitis C, and various other problems. Many of her friends tried to stay in touch by phone or by visiting her in Las Vegas over the past several years.
Renee was a personal friend, and also my co-author on the book "A Guide to Living With von Willebrand Disease." She had traveled with me and my family to Puerto Rico and the Dominican Republic on business together, and she and I presented in places as close as Connecticut and far away as Australia. She was brilliant; she was fun-loving. She was could be irreverent yet compassionate. She loved animals, and one of her favorite gifts to her friends was to send a photo of herself each New Year's with a different animal from different parts of the world: kissing a dolphin in the Caribbean; draping a boa constrictor around her neck in Mexico; nuzzling an alligator in New Orleans; atop a camel in the Canary Islands. Renee knew how to grab life by the horns and tame it, and she wanted others to do that, too, regardless if they had a disorder or disability.
Messages have been pouring in to me from around the world. Helen Campbell, UK, (http://groups.msn.com/WomenwhoBleed) wrote: "Renee has been a great inspiration to me personally (and to other women) in raising awareness and promoting advocacy within, and outside of, the bleeding disorders community regarding the issues surrounding women and their bleeding disorders. Her work has touched the lives of many both directly and indirectly. It is a great loss for the Haemophilia communities and yet must be a greater loss for her family. Thank you, Renee. You made such a difference. From your acorns you saw great oaks grow, now the branches are reaching far and wide."
Parimal Debnath from the Haemophilia Society of Bangladesh wrote, "It's really sad news. My condolences for her family. May God rest her soul in eternal peace."
Dr. Carol Kasper, renowned hematologist, Emerita Professor of Medicine, University of Southern California, Orthopaedic Hospital and colleague and friend of Renee's, perhaps summed up Renee's legacy and memory best:
"Renee Paper had a vision for Nevada, its own hemophilia foundation, its own hemophilia treatment center, and she made them happen. It wasn't easy. Renee was blessed with energy, enthusiasm and perseverance. She had a great ability to organize and to inspire.
"She also knew how to have fun. She was the life of the party! I remember driving with her down a country road in Ireland, in sheep country. Sheep strayed across the road. Renee stopped and shooed them off, and you have no idea how hard it is to shoo a sheep. We cleared a bit of road, drove on around a curve, and, more sheep! We wound up in gales of laughter as we
continued to shoo the sheep, and shoo and shoo.
"I am grateful to Dr. Jonathan Bernstein and nurse Becki Berkowitz, also Dr. Heather Allen, all of Las Vegas, who watched over Renee in her last illnesses, whenever Renee's spirit of independence would allow it.
"I shall remember her achievements, but the images of her exuberance and hilarity are foremost in my mind at this time. Her name will be remembered."
Renee's funeral will be held Monday, November 12, at 2:00 p.m. at:
Mount Sinai Hollywood Hills--Tanach Chapel
5950 Forest Lawn Drive
Los Angeles, CA 90068
Donations may be made to:
Temple Bnai Hayim
4302 Van Nuys Blvd.
Sherman Oaks, CA 91403, or
The National Hemophilia Foundation
116 West 32nd Street, 11th Floor
New York, NY 10001
Cards may be sent to:
4004 Sapphire Drive
Encino, CA 91436
Good-bye to a tremendous leader, warm and loving human being, educator, visionary, and friend. There was ever only one Renee, and we will miss her. Please post your thoughts, stories and tributes to Renee here.
(Photos: In Puerto Rico, laughing about the spit, 1999; One of Renee's famous post cards; In Connecticut at Camp Hole in the Wall Gang for a VWD family weekend)
Sunday, November 04, 2007
NHF's 59th Annual Meeting wrapped up today after a full three days of workshops, lectures, children's activities and wonderful social events. It's estimated over 2,000 people attended, but certainly this was a record attendance judging from the crowds. This was a great time amidst the changing times we now face with tighter insurance reimbursement, which is affecting everyone.
Held in the family-friendly city of Orlando, Florida, the event attracted families from across the country. Because the US is the world leader in factor concentrate manufacturing, and also is a world leader in hemophilia research, the event drew in visitors from Mexico, Guam, Puerto Rico and even China. Held at the stunning Orlando World Center Marriott, the venue offered plenty of space for all the meetings and is close to the theme parks Sea World and Universal Studios.
This was my 16th annual meeting, and I think I saw more of my long time friends and colleagues than ever before. We all laughed at how we have changed over the years, and marveled at our children, now in their teens and 20s. We remember those we have lost, and are deeply grateful for those still with us.
My main task was to be present for a book signing of "Raising a Child With Hemophilia," edition 4, completely revised and redesigned, and supported with a grant by CSL Behring. We gave away many copies and heard many stories of how this book, first launched in 1991, helped so many families through the early years of child rearing. Indeed, some of the moms who first submitted stories for the book, back in 1989, were actually there! This included for me a surprise visit by Lou Ann Helmen and her son Stephen, whom I have not seen in over 10 years, and who gave me many insights into hemophilia when I was first writing the book.
I also saw Jocelyn Bessette Gorlin, now of Children's Hospital of Minneapolis, but who was originally at Boston Children's Hospital, and was the nurse who first called me on a Friday afternoon to say "Your son has hemophilia…" Jocelyn was the first person to introduce me to and walk me through hemophilia, and she encouraged me to write my book, and also served as medical editor. To see her again… well, there just are not words! She knew Tommy as a newborn, and gave us education, support and friendship during our rough and tough times.
I attended a great symposia, sponsored by Baxter, on Transitions, and heard wonderful advice from Susan Zappa, RN, of Cook Children's Medical Center in Fort Worth, Texas, and Danna Merritt, MSW, of Children's Hospital of Michigan, Detroit. Transitions is a key focus area for everyone in hemophilia now, as we usher in a new generation of young adults who mercifully escaped the HIV era in the mid-eighties and who are now young adults and striking out on their own. The panel gave advice on how to equip this generation with skills and tools to live on their own successfully with a bleeding disorder.
In between sessions, families could stroll among the many booths, where pharmaceutical and home care companies provided representatives, to answer questions about products and services, and educational items about bleeding disorders.
After a day full of networking, sessions, meetings and lectures, families relaxed with evenings at Sea World, compliments of CSL Behring, and last night, Universal Studios, compliments of Baxter. After the rides was DJ-driven dancing where everyone--industry, patients and medical providers--could party.
Thanks to NHF for their incredible hard work and dedication. These events are mammoth and none of us can truly appreciate the effort that goes into it, especially when the event proceeds without a hitch. NHF is to be commended for this fabulous event. Thanks also to all the many corporate sponsors, including home care and pharmaceutical companies, and the various nonprofits, who all provide financial support. The Florida chapters excelled as our hosts. Next year's meeting is in Denver, Colorado and we all hope to see you there!
(Photos: Booths; with Debbie Adamkin and Debbie de la Riva, friends, moms and also chapter executive directors; with Delin Kong, president of Hemophilia Home of China; with Johnny Marquez, new president of the Puerto Rico chapter)
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