The bustling airport, the long lines, new hotels popping up… all speak to a brisk tourism that provides the tiny island nation of Barbados with a staggering 17.5% of its $4.8 billion GDP. But hemophilia remains a quiet part of this country of 281,000.
Laurie with the members of the Barbados Haemophilia Association
I last visited in 2014, when I had already made contact with Sofia, a young mother there in need of factor. I sent her some and in turn, with a bit of guidance, she was kind enough and motivated to start the Barbados Haemophilia Association, which continues this day. She has since left the island to raise her child in the United States, and Erica Worrell, another mother, took over as president.
It’s not easy. And like many businesses, nonprofits and lives in general, momentum was cut short by the pandemic. This was my first real country visit for hemophilia-related purposes, since the pandemic. I last saw Erica on the streets of Glasgow, Scotland in 2018, following the World Federation of Hemophilia Congress, as we were both window shopping. I looked forward to hearing how things were going; what were the factor needs; what were next steps?
After a lovely luncheon I hosted today for some of the families, I can see that hemophilia in Barbados seems in a holding pattern.
There is much potential. It’s a small island; only 33 patients known patients, with quite a few related. The government even buys some factor. They have a powerhouse of a nurse in Virginia, who knows everyone and knows hemophilia.
Unfortunately, the ERs do not. Despite the BHA’s best efforts, Jeffrey, a man with hemophilia B who I met the last visit, said, “I’m scared to go to the hospital.” Apparently the ER staff, as in many developing countries, do not place hemophilia as a priority (if they can’t see the bleed), and do not listen to the urgent requests of the patients or parents.
Erica Worrell, president of BHA
They also have problems with racial divides, believe it or not. There is a parish (like a county) called St. John’s, where descendants of the Scottish and Irish indentured servants or forced laborers who once landed here hundreds of years ago settled. They tent to keep to themselves. There are hemophilia patients there, but not much is known about them.
Access to factor is good, when it is available. What is provided by the government and by the WFH is typically not enough to meet needs. Though it certainly is much better since I visited in 2014! Erica and the BHA are well connected now to the WFH, which was one goal of forming the BHA.
Jeffrey was one of 11 children growing up in the 60s. One brother also has hemophilia. His nephew, Leemar, and I are good friends now on Facebook messenger, and he lets me know when he needs factor (FEIBA or NovoSeven). A great-nephew, Konnor, was also there, a rising star! He has big dreams to become a hematologist, and something tells me he is going to succeed.
Laurie with Leemar
At least things are completely better than when Jeffrey was young. He tells me mischievously that as one of 11 children, “They couldn’t keep on eye on me so much!” He is famous as a teen for cliff diving… without factor! He describes the pain he endured as a “monster. You could feel it creeping up on you, thump, thump, as the knee got bigger and bigger.” The pain was excruciating, but Jeffrey tried to be stoic. Life was measured second by second then.
Thankfully now, because of the combined efforts of the BHA, WFH, and the dynamic nurse Virginia, a new generation has a chance. Barbados seems a bit paused, but it is starting to rise again, like the rest of the post-pandemic world. Erica already has a new idea for a comic-book style publication about the Jeffrey’s story, Leemar’s story… everyone’s. It’s a great idea, so long as they leave our Jeffrey’s cliff-diving escapades!
We parted as good friends, and they dispersed with the bundle of factor and medical supplies I brought. I’ll be back next year, with more factor, supplies and hoping to see activities and a new comic book!
Both the Royals and the Russians have been making the news this past year, not much of it good. For the Royals, it’s mostly just the Markles (on their “Privacy Tour”). For Russia…. well, let’s not go there.
While Russia is making a ruinous name for itself these past two years, it’s famous for its hemophilia history. Which originated from the English Royals.
We noted last week that it’s Bleeding Disorder Awareness Month, and we shared some popular myths about hemophilia. One was that hemophilia has been dubbed “The Royal Disease.” I shared in detail how this happened, and who it affected in my blog here.
But the most famous outcome of a genetic link in the English Royal family happened when Princess Alix, whose grandmother was Queen Victoria, a carrier of hemophilia B, married Tsar Nicholas II of Russia. Queen Victoria had nine children, of whom two were carriers (Alice and Beatrice) and one had hemophilia (Leopold). It was well known that hemophilia was now running in the family.
Alix, nicknamed “Sunny” by Nicolas, gave birth to Alexis (or Alexei), after already having four girls. They got their heir to the throne. But Alexis had hemophilia.
Alexis had no access to clotting factor of course; this was 1904, after all. The royal family came rely on a person of ill repute: Rasputin, the mad monk. He had a lascivious reputation but also a track record of helping people in pain, probably through hypnosis. Rasputin became ingratiated into the royal family and helped also to bring down the Russian monarchy. It’s been proposed that Nicholas II was so distracted by his son’s suffering due to hemophilia, that eventually he lost his grip on the monarchy at a time when the Bolshevik Revolution was poised to strike. And it did. It has been proposed that hemophilia changed the course of World War I, and changed the course of history. The Cold War, the Soviet Empire… all find their roots in the royal palace of the Tsar and a little boy with hemophilia.
It’s Bleeding Disorder Awareness Month! True: Designated in 1986 as Hemphilia Awareness Month this is the month to educate the public—and ourselves—about bleeding disorders.
I usually start with what hemophilia is not. Perhaps because hemophilia is so rare, it has generated many myths. Myths are stories, sometimes created by people in an attempt to make something understandable when scientific information is unavailable. Remember the Greek tale of Pandora’s Box? Pandora was the first woman on earth. She was given a wedding gift from the gods, a beautiful container. But she was warned never to open it. Driven by curiosity, she disobeyed the gods and opened it. Inside were evils—hate, disease, pain—that flew out of the container and escaped into the world. This story was invented by the ancient Greeks to explain sickness and suffering, because they didn’t know about bacteria and viruses. Some myths develop from a nugget of fact or experience, but then take on a life of their own within certain cultural settings.
Becoming familiar with the most widely held myths about hemophilia and their sources will help you explain the facts of the disorder to others. Here are some common myths about hemophilia.
Truth: Anyone can get hemophilia—rich or poor, famous or unknown. Hemophilia was dubbed the royal disease because in the 1800s, hemophilia affected the family of Queen Victoria of England, who was a carrier of the hemophilia gene. Hemophilia was transmitted to three other royal families when Victoria’s daughters and granddaughters, also carriers, married into the Russian, German, and Spanish royal families. Though it’s no longer known to be present in any European royal family, hemophilia is still often associated with royalty.
Myth: A small cut will cause blood to rush out and a child to bleed to death.
Truth: People with hemophilia do not bleed faster than anyone else. But they will bleed longer because their blood doesn’t clot properly. Still, not every cut will continue to bleed just because a person has hemophilia. Some cuts, especially small ones, stop bleeding on their own.
Myth: Children with hemophilia cannot play sports.
Truth: Children with hemophilia enjoy a wide variety of sports, including swimming, baseball, tennis, running, and martial arts. You’ll realize this someday when you’re chauffeuring your sports fan to various afterschool activities! High-impact contact sports such as football, hockey, and boxing are not advised. Physical activity is always encouraged for children with hemophilia.
Myth: Children with hemophilia must wear helmets and protective gear.
Truth: Although some parents place protective helmets or knee pads on their toddlers, it’s uncommon for a child with hemophilia to wear protective gear for normal activities. Medical treatments today are excellent and easy, offering a normal lifestyle. Of course, all children must wear protective gear when participating in risky activities: helmets should always be worn when riding bikes or motorcycles, ores, or when skiing or snowboarding. Oh yes, your child will be able to do these things one day!
Myth: Children with hemophilia must attend a special needs school.
Truth: Except for having a defective blood protein for blood clotting, our children have normal health and intelligence. They can be enrolled in any school. Overall, your child is normal and will be treated as such by the school system and the public.
Myth: Children with hemophilia need to be placed in special schools or classes.
Truth: Except for having a defective blood protein for blood clotting, our children have normal health and intelligence. They can be enrolled in any school. Overall, your child is normal and will be treated as such by the school system and the public.
Myth: Children with hemophilia will grow out of it.
Truth: Hemophilia is a lifelong condition. Your child does not have a disease that will get better or go into remission. Your child will not grow out of hemophilia: the mechanism for producing clotting factor is defective. Hemophilia is part of his genetic makeup, just like traits for hair or eye color, which can’t be outgrown. However, there is now a genetic therapy available for hemophilia B that will give, with one shot, protection against uncontrollable bleeds for a long time.
Myth: Hemophilia is caused by something you did during pregnancy.
Truth: Nothing you did while pregnant gave your baby hemophilia. Women who have perfect pregnancies and follow every safety precaution can give birth to children with hemophilia. There’s nothing you could have done to prevent hemophilia; nor could you have changed your child’s hair or eye color. Hemophilia is simply part of his genetic makeup.
Don’t feel guilty; get educated, and educate others. Now’s the month especially to do this!
Hemophilia—all bleeding disorders really—requires help, and not just from therapies. Due to healthcare changes, patients are required often to pay higher out of pocket costs. And sometimes, it’s just life: single parenting, limited job opportunities, higher education bills, gas, care and health insurance. We could all use help.
Hemophilia Federation has a great listing of all their ways they might help. HFA has long impressed me with their direct-to-patient aid. It’s a lot like what we do with Save One Life overseas: we give direct aid to those most in need. You local chapter might be a good first place to start, but then look at HFA’s website to learn more.
Check out these opportunities and find out if you are eligible:
I’m here in Antarctica, and have visited the grave site of one of the most famous leaders in history: Ernest Shackleton. The famed polar explorer was renowned for surviving a horrendous situation, and leading the men directly under his watch to safety. It’s such a compelling story, that I had to come to the Antarctic after reading in depth about it for years!
Ernest Shackleton
The bleeding disorder community is filled with admirable leaders, too. Though I often say that no one is a born leader, leadership can be birthed. In our community, leadership arose from the cataclysmic devastation when HIV was discovered in the blood supply in the 1980s and infected about half of our community. This horrific event birthed many leaders, whose legacies stand today.
When we think of those leaders—like Corey Dubin, Dana Kuhn, Val Bias, Jeanne White-Ginder, and Louise Ray—we think of certain leadership qualities: vision, authority, courage, commitment. These are leaders who made history and secured a safer future for us all.
Yet today, when you ask regular moms and dads and hemophilia patients about leadership, a slightly different picture emerges, highlighting different qualities. It helps to know more about what our community members seek today in leadership—who they admire, and what they expect from the leadership of tomorrow.
Types of Leadership
There are many types of leadership, but I usually peg leaders as one of three types: positional, situational, and transformational. In a nutshell, positional leaders are usually elected, appointed, or inherited: think president, CEO, executive director, chief, even king or queen. Situational leaders may or may not be positional leaders, but they rise to the forefront when a problem, event, or situation calls for a leader. Think first responder, rescuer, or anyone who steps forward to take action, like Lech Walesa of Poland in 1980, or US Army Major Hugh Thompson, Jr., during the Vietnam War. Or even Ripley in Alien!
Transformational leaders influence a community, industry, group, or era to make massive and lasting changes: think Jesus, Gandhi, Walt Disney, or Steve Jobs. When asked about leaders, people often name leaders who fall into those three categories. Characteristics of these types of leaders? Powerful, authoritative, visionary, action-oriented, decisive, committed, communicative, innovative, influential, even charismatic. Do bleeding disorder families see leadership the same way?
The Softer Side of Leadership
Rather than describe leaders in our community as figureheads with power and influence, parents and patients associate softer qualities with leaders these days. These softer qualities include traits that make the “followers,” or beneficiaries of leadership, feel more secure and feel their needs are being met. We polled parents and patients on Facebook to see what leadership qualities they look for most in the bleeding disorder community. And top among these qualities is listening.
Eva replied, “For me, a good quality of leadership is to have an ear to listen, to communicate. To protect their member.” Krissy agreed. “Leadership is the ability to not just listen but truly hear you and your concerns. A leader inspires others and is someone who advocates passionately.”
Dr. Anupama Pattiyeri of India added that a leader must be “a patient listener and motivator—someone who focuses on solutions and not on problems alone.” Katelyn and Alicia both put listening as their first sign of good leadership.
Wayne remarked that leadership means “the ability to listen before deciding. Having ties to the community and leading with integrity, honesty and compassion.” Karla agreed; for her, leadership means “commitment to our community combined with a personal connection.”
Tina noted that listening, combined with empathy, insight, and integrity, gives a leader the ability to understand life from a patient’s or caregiver’s point of view; the ability to understand important values of the community; and “the strength to stand up for those values.” In other words, parents and patients view the traditional forms of leadership as less important than “servant” leadership.
Servant Leadership
The style of leadership parents and patients most often mentioned is known as servant leadership. Servant leadership puts people’s needs first. A leader must understand the needs of the followers or constituents, be there with them, even suffer with them. Indeed, a trait of servant leadership is compassion, which means to suffer or feel alongside someone. It follows that traits of servant leaders include listening, empathy, stewardship, awareness, healing, commitment, and community-building. Historically, servant leaders have been either positional, situational, or transformational leaders too, but have always put their people’s needs first.
Ray agreed. “To be in service to the people you are leading—servant leadership” explains the style of leadership that works best today in our community.
Who are the servant leaders in the bleeding disorder community? Kathe cited her HTC physicians: “Both physicians are excellent leaders…They always take time to explain to patients and integrate therapies into everyday life. I am a better nurse for knowing them.” Rayna mentioned her doctor, currently at St. Jude’s, “for leading a whole generation of patients through recombinant therapies by studying the medicine and checking the facts. All the while he has a wonderful bedside manner to both parents and children.”
Kelly, who was nominated by respondents as a servant leader herself, listed integrity, compassion, and honesty as important qualities for our community leaders. These characteristics don’t require a leader to be in a position of authority.
But positional leaders—those in authority—can be servant leaders as well. Christal nominated a couple who started a chapter in her state, and do so much to help the underserved members of our community.
Likewise, Tiffany recommended Sue Martin, executive director of Hemophilia of South Carolina, as a servant leader. “She gives our organization her heart and soul. She has turned our local chapter into a source of hope, progression and compassion for our bleeding disorders community. And most importantly she drives people to educate themselves on advocacy, so we can advocate strongly and effectively for our children, and teach them how to become strong advocates for themselves.”
Ray warned that as great as servant leaders are, they must ensure that they are not indispensable. In other words, leaders must develop other leaders.
Mentoring
The great British wartime leader Winston Churchill was called the “Old Lion.” I think of this when I think of the top leaders in our community who fought our war with HIV, and are now in their 60s. Mentoring a new generation of lions, then, is vital. Some mentoring happens at the top, with youth leadership programs from National Hemophilia Foundation (NHF), but mentoring can occur anywhere by any of our servant leaders.
Two mothers mentioned their own sons as servant leaders who mentor younger followers. One mentioned that her son never missed a year of summer camp since age seven, and even after moving out of state for a while, came back to work as a counselor in summers. Servant leadership by example, combined with positional leadership, is powerful!
Kimberly nominated her son, who she believes has these leadership qualities, so important in servant leaders: integrity, honesty, loyalty, empathy, compassion, inspiration—and mentoring.
Unsung Heroes
Finally, Lisa made a poignant suggestion: “I’d like to nominate all of the ‘silent leaders’…parents who take the time, often in private, to welcome new members, offer our help, guidance, experience as parents with a baby with a bleeding disorder…Often done behind the scenes, but very helpful and appreciated nonetheless.”
Sometimes the greatest leaders are the ones without the fanfare, tweets, photo ops, and popular achievements. They are the servant leaders who quietly and modestly, powerfully and permanently, change the world day by day, child by child. They are all of you—parents, patients, doctors, nurses—who dedicate their lives and careers to the bleeding disorder community.
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