Hemophilia leadership

Why, When, and How People Start Hemophilia Organizations

Laurie Kelley February 5, 2024

Social media has become a forum for advocacy, sharing ideas, and raising concerns about anything related to leadership in hemophilia. With the recent changes at Hemophilia Federation of America, people are concerned about leadership in our community: what is happening now, and what will happen in the future? I’m in the process of writing another book on leadership, so the topic has been on my mind. Here’s an excerpt from my book Success as a Hemophilia Leader, about when people decide to start hemophilia organizations, and why. It may not be directly relevant, but it has ideas to appreciate and think about.

Leaders start hemophilia organizations for many reasons. Whatever the reason, the founder of a new organization almost always reaches an emotional threshold: “I cannot accept this
situation anymore.” At that point, the new leader decides to take personal responsibility: “Something must change. I will change it.”

Do you see yourself in any of the following life-changing situations?

You need factor for yourself or your child. When there is no factor or advanced treatment in your country, you may request a donation of factor from charitable organizations such as Project SHARE and the World Federation of Hemophilia (WFH) Humanitarian Aid Program. These organizations might encourage you to start a hemophilia organization.

In 2017 Kunaal Mark Prasad of Fiji requested factor from Project SHARE via Facebook. At age 23, he had never had any. His doctors were reluctant to use concentrates, and instead
used cryo, a risky treatment. After his first factor infusion, Kunaal realized that he could help improve the lives of the estimated 60 people with hemophilia on his islands. He began reaching out, to find others and to start a hemophilia organization.

In 1998 Francisca Bardalez, from the Central American country of Belize, contacted LA Kelley Communications, for a factor donation. Francisca is the mother
of four boys—two with hemophilia. A single factor donation would help her boys, certainly.
But what then? I suggested that Francisca form a hemophilia organization. This was a
challenge, because Francisca lived in a remote area, where roads were rough and money was
limited. But her dedication triumphed. Francisca founded the Belize Hemophilia Society
on February 13, 1999.

This is how hemophilia organizations were formed with our help in Jordan, Tanzania,
Ghana, Zambia, Barbados, Fiji, and Rwanda. Watching your own child, a family member,
a fellow patient or friend suffer the excruciating pain of uncontrolled bleeding is a powerful
incentive.

You are inspired by another Hemophilia Leader. Leaders have strong motivational
effects on others. In the late 1990s, Raja Ammoury of Jordan, mother of a child with hemophilia,
read a story in the newsletter Hemophilia Leader about Jad Jadallah of Palestine. Jad is
a man with hemophilia who founded the Palestinian Hemophilia Association. Like Jad, Raja
is Muslim, and she felt a strong connection with him. Raja contacted me through her sister
in Ohio (US), an acquaintance of mine, and asked for advice. Inspired by Jad’s success, Raja
formed the first hemophilia organization in Jordan.

Hemophilia Federation (India), one of the largest hemophilia organizations in the
world, was founded in 1983 by Ashok Verma, a person with hemophilia. Ashok was inspired
by another leader, Professor Pier Mannucci, an Italian hematologist who also served as vice
president medical of the World Federation of Hemophilia. Professor Mannucci oversaw the
amputation of Ashok’s leg in Italy, and every night during the recovery period, Mannucci
visited Ashok as his doctor, but gently pressed him to consider starting a hemophilia organization in India. Ashok returned to India undecided. But Mannucci didn’t give up. He called Ashok daily to encourage him. Ashok was inspired by Mannucci’s attention and care. He
found his calling as a new Hemophilia Leader.

You want to start a chapter. At the WFH Congress in Montreal in 2000, I met
María Andrea Robert of Argentina, a young mother of a child with hemophilia. María told
me, with many tears, that she felt her national hemophilia organization was not reaching
families like hers in remote areas of her country. María briefly considered starting a new
organization—a second organization.5 But after careful consideration, María decided to
open an affiliate—a chapter—to coordinate with the national organization in Buenos
Aires. She could learn from the staff and use their resources, yet channel some of these
benefits to Cordoba, where she lived. María now runs a successful chapter and works well
with the national organization.

You have hemophilia and a special skill. It’s fortunate when someone with hemophilia
and a specialized skill, such as lobbying, medical knowledge, or public relations, can become
the leader of a hemophilia organization. Yuri Zhulyov is a lawyer with hemophilia. As president
of the Russian Hemophilia Society (RHS) for the past 20 years, Yuri brings enormous
talent and skill to helping decipher Russian law and moving his programs and goals through
the Russian legal system.

You resurrect a nonfunctional hemophilia organization. Your country may have a
hemophilia organization that is nonfunctional. The governing board never meets, the office
is deserted or nonexistent, and there is little or no communication. This happened in Puerto
Rico, an island territory of the United States. Yolanda Vega, the concerned mother of a child
with hemophilia, eventually tracked down the former president of Asociación Puertoriqueña
de Hemofília—who confessed that he was too busy to manage it. Rather than start a new
organization, she formed a new board and drafted a new constitution, also called bylaws.
Within one month, the Puerto Rican Hemophilia Association was reborn.

You are a physician and want to help patients. There may be nothing nobler in our
hemophilia community than a dedicated physician who becomes part of, or creates, a
hemophilia organization. He or she may already be struggling with the country’s lack of
resources, and may have a large caseload of not only hemophilia patients, but patients
suffering from other blood disorders or cancer. Many physicians offer free treatment, work
long hours, and open their hearts to these patients. One such physician is Dr. Gillian Wharfe
of Jamaica. She gives an extraordinary amount of time to treating hemophilia patients. She
offers her leadership and medical assistance to the Jamaican Hemophilia Association.

Sometimes, as Gandhi once said, we need to be the change we want to see. HFA is looking for board members right now; you can be apart of this change, if you have the vision, passion and skill to be a Hemophilia Leader.

Leadership Redefined

Laurie Kelley February 19, 2023

First published in PEN February 2020

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!

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.

Want to be a Leader?

Laurie Kelley March 2, 2015

Leonardo di Vinci once wrote: Ask advice of him who governs himself well.

Learning to govern oneself is a principle of leadership, and can be taught and then honed. But not just through books. Often, the best leadership tenets are learned in real life. Bayer is offering a chance for young, potential leaders to govern themselves, test themselves and put their burgeoning leadership in action.

The Bayer Hemophilia Leadership Development Program is one of my favorite programs in our community. It’s a rare opportunity to be in the thick of decision-making, action and marketing. Read about it below, and apply at www.HemophiliaInternship.com! Deadline is March 13!

Start shaping your future and your community!

Making a change in the world begins by making a change in your community! Apply to be an intern through the Bayer Hemophilia Leadership Development Program and begin to learn how to be the change YOU want to see in the world. Students enrolled full-time in college who are touched by hemophilia can apply now for the opportunity to: Engage in leadership training and hands-on business projects Learn how to support the hemophilia community as a potential future leader

Apply now for a six-week paid internship at Bayer HealthCare’s U.S. headquarters in New Jersey. In addition to working directly with leaders at Bayer, selected interns will:
Collaborate with local hemophilia organizations and learn about efforts to support the hemophilia community and partnerships with business professionals
Meet with healthcare public policy professionals to experience first-hand how effective advocacy relations impacts legislative decisions
Be responsible for developing a project that will be presented to Bayer Senior Management.

Learn more at www.hemophilialead.net

Great Book I Just Read

Take Yourself to the Top

Laura Fortrang

This is the perfect book for beginning leaders. A hard-hitting, direct and fun read about how to clarify your needs, set goals and remove obstacles to your goals. Fortrang is a life coach who shows us that without self-mastery, we will continue to be victims of our own biases, addictions, blaming mindsets, and circular thinking. A quick read, fun and impactful, you will start to make immediate changes after reading this! I’ve been reading this book for over 10 years every January to kick off the new year and get myself on track. It works! Four/five stars.

Hemophilia Leadership: Jesus’s Example

Laurie Kelley December 22, 2014

Christmas is celebrated this week, and has me thinking of leadership. I have worked with many emerging leaders in the international hemophilia community, who are volunteering to help their country’s people with hemophilia. It’s a daunting task: these volunteers are typically mothers or fathers who struggle daily to make ends meet, and raise with a child with hemophilia without factor. To take on the mantle of leadership, and the challenge of forming a nonprofit without experience, money, resources or even much time, is sheer bravery. We here in the US cannot even begin to imagine their daily lives. Every step is hardship.

Caravaggio’s Adoration of the Child, in the Uffizi Gallery, Florence, Italy

I sometimes think of the example of Jesus when I approach new leaders, or try to inspire new leaders. Jesus was born into poverty too. He had no earthly resources. He wasn’t trained to be a leader–he was a carpenter. He saw the suffering around him; indeed, his very birth triggered the “Slaughter of the Innocents.” Imagine knowing that fact as you are growing up. He was gifted with the ability to heal. And he had to sacrifice much: leave his mother and father, travel far from home, find disciples, spread his message without any use of newspapers, radio or cell phone. No slogans, no banners, no World Jesus Day. It all came down to him.

Our leaders in Africa, South America and Asia also face much sacrifice and struggle; they need to find disciples; they need to educate the masses. On top of it they have a child with a painful and life-threatening disorder. But these Hemophilia Leaders follow the same style of leadership that Jesus exemplified. They are–or should be–servant leaders.

A servant leader puts the needs of his people over his own desire for control, power, acquisition, or ego. He is attuned to the needs of his people, and seeks to meet them. In hemophilia, this means helping find those who suffer, putting them in touch with a treatment center, educating them about their disorder, and above all, getting them factor.

So in a way, Hemophilia Leaders can “heal”: they learn who to reach out to (doctors, WFH, Project SHARE) for help, for factor. I’ve witnessed so many amazing leaders, some young, some beyond retirement, dedicate every minute of their free time to helping the suffering in their countries. And this while they themselves often need help. Imagine a Hemophilia Leader contacting us at Project SHARE, while they themselves are in pain from a bleed, requesting help for one of their patients. That’s servant leadership.

They are stoic, strong, driven with an inner passion, rise above their own pain and suffering, and above all things, have faith. Faith and trust that someone will help them, that they can change the situation in their countries to make it better for a new generation. Faith in themselves, because they often believe in a higher power helping them, whether a deity or an organization, or both! They have a vision that compels them. They are driven and dedicated. Meditating on this at Christmas, I am in awe of these Hemophilia Leaders–patients, parents, doctors–and I cannot wait to serve them in 2015. What a gift they are to us at Christmas time and throughout the year.

Book I Just Read
Jesus, CEO
Laurie Beth Jones 1995

What skills, attributes and style did Jesus possess that made him a success and a “fisher of men” that leaders today can emulate? That’s the goal of this book, broken down into easy-to-read chapters that pose personal questions to consider at the end of each. The book may be good for leadership novices, but lacks a sharp, in-depth comparison of Jesus’s life and skills compared to those of a modern-day business person (such as provided by Margaret Morrell in Shackleton’s Way). This is a superficial, often trite comparison of Jesus’s skills, mindset and style to modern day leaders. Some are stunningly obvious: He planned. He formed a team. He had a vision. He expressed himself. He forgave them. Simplistic, and questionable at times. (“He came from left field.” “God surprised people.” What? I thought his coming was prophesied, like for centuries?)
There are much better books on Jesus and leadership. Try John Maxwell’s books on leadership and skip this outdated one. It still sells for $10 on Amazon! One/five stars.

Barbados: Preparing Leaders for Change

Laurie Kelley February 17, 2014

Last Sunday, I had a nice flight back from Union Island to Kingstown, St. Vincent, and Martin Jennett, the pilot, was so supportive of the work we do at Save One Life, he gave me a huge discount on the charter flight price, only $100 (compared to $160 going over). We said our good-byes, and then I waited to board my flight to Bridgetown, Barbados. I sat in the little airport café, sweating in the humid air, answering email and reading. It was a quick flight to Barbados.

I settled in at a pizza place (Chefette) at the airport to wait for and in a little while, a lady and son came up to me—Sofia! And her four-year-old Aaron, who has hemophilia. We embraced and as always, when you meet another mom (or dad) of a child with hemophilia, it really doesn’t matter your nationality, race, religion. We are all family.

Sofia had asked me to come and visit, as no one from the hemophilia community has been here before (that I know of). She is interested in starting a hemophilia society. We hold Aaron’s hand– he is a live wire–and go to the parking lot, stuff the suitcases in and drive to the Marriott, not too far away. I am nursing a very sore throat. Sofia drove me to the Marriott, and we said our goodbyes.

Monday February 10, 2014

II had a leisurely morning, breakfast downstairs and then waiting for Sofia. And waited. Island culture—island time. Things will happen when they happen!

When she arrived, we had a chat. She explained about how she learned Aaron had hemophilia: He was 9.8 lbs at birth, seemingly normal. At 9 months he began crying all the time, and his knee was swollen. She took him to Dr. Inniss, her pediatrician, who sent her to the Queen Elizabeth Hospital (QEH), the only public hospital on the island. The doctors didn’t know what was wrong. They admitted him and did a biopsy on the knee! And they did an x-ray but never saw a bleed. The knee was traumatized but eventually the bleeding stopped and went down by itself.

In 2009 Sofia went to New York for a vacation, as a relative is there. Aaron had had a

fever. As the plane was landing Aaron cried and cried, inconsolable. No one knew but he was having a spontaneous head bleed. They took Aaron to Long Island
Jewish Hospital, a good HTC, and Dr. Richard Lipton helped determine this was a
cranial bleed. They ordered a CT scan. She said they told her, another 15
minutes and the damage might have been irreparable. Now they realized he had
hemophilia. Her cousin finally told her that her dad and both uncles had it! Aaron
stayed at LIJH for 6 months, and received factor. And there seems to be no permanent damage, thankfully.

Sofia explained how hemophilia is treated. Here in Barbados, everyone gets free factor. But I questioned what exactly does that mean? An unlimited supply? No. It means that the government buys a certain amount for the year, and whatever is there, you can use and don’t get
charged for. But inevitably it’s not enough and gets used quickly. This is why a few patients had recently contacted us for a donation.

Sofia also mentioned Aaron’s dosage, 1700 IU for a 4 year old, three times a week. This dosage seemed excessive.

We then drove to meet with Dr. Patricia Inniss, Aaron’s pediatrician. We waited about an hour and a half in her waiting room. It seems our day is
filled with waiting, waiting. No lunch. My throat got worse as the day went on. It was hard to maintain a conversation as I could hardly speak.

Finally we were let in. Dr. Innis is a lovely woman, graceful and civil. I gave her our toddler books about hemophilia, and asked her about Aaron, and the state of hemophilia on the island. I asked Dr. Inniss about Aaron’s prescription; why a 4 year old is be given 1700 IU, enough for a teenager. She wasn’t sure. So we talked about lowering his dose.

After that we drove to meet with Ms. Maryam Hinds, director of Drug Services of Barbados. Gentle, articulate, devoted. We had a nice
chat. She showed me the drug formularies, the tender and explained how factor was procured. According to her, they spend only enough money for 75,000 IU of factor VIII, much less than what one American child uses in one year! But at least Barbados is buying some. Many countries that have much more money than Barbados don’t even buy factor.

Queen Elizabeth Hospital

No one seems to know how many patients are on the island. I calculated 20? But one doctor later estimated 50. This, I told Sofia, is where a patient organization can really help out, by reaching out to patients in all the “parishes,” as they call them—St. John’s, St. Andrew’s, etc.

Tuesday February 11. My voice is gone and I can only whisper now, which is unfortunate as we meet with hospital doctors today. Today’s meetings warrant a dress, and Sofia drives us to meet the hematology staff at the Queen Elizabeth Hospital (QEH). The hospital is your basic, underfunded public hospital in a developing country, yet it buys factor, which is astounding. We go to hematology and meet with Dr. Laurent, Dr. Hawkins (originally from England) and a student. Laurent accepted our donation of factor, looked into the bag, passed over any thank you to sadly ask, “No
NovoSeven?” Which I guess shows the state of desperation here.

She painted a picture of hemophilia on the island. One patient is a fisherman, and he was forever getting cut with hooks, cleaning knives, etc. They asked him to think about getting another job perhaps? They
also mention the “poor whites,” on the other side of the island. This raised our eyebrows as being a politically incorrect thing to say, but yes, this is a real term used here.

The “poor whites” are descendants of an estimated 50,000 white slaves transported from Ireland to Barbados between 1652 and 1657. I read on line “Having succeeded in recruiting Irish men to die in the services of France, Spain, Poland and Italy, Cromwell turned his attention to others – men and
women press-ganged by soldiers, taken to Cork and shipped to Bristol where they
were sold as slaves and transported to Barbados.” They are now called “poor
whites,” or Red Legs or Red Shanks. They live in St. John parish and no one
knows much about them except they have hemophilia among them; they tend to intermarry and not mingle with the blacks. I thought that would make for a very interesting visit my next time around.

After our meeting, we went with Sofia to the pharmacy and waited till her number was called. She received quite a few boxes of FVIII. More concerning was that Aaron gets an allergic reaction to each infusion of these. I told her that her hematologist needs to let the manufacturer know.

We then drove a long way round the island to visit Dr. Chris Nicholls, her hematologist. He’s a nice guy. Young, responsive, communicative, smiling. When I carefully broached the subject of Aaron’s dosage, he agreed that we needed to look into this. When I carefully broached the subject
of Aaron’s allergic reaction, he was also in agreement that the manufacturer needed to be contacted. It’s great to find a doctor so agreeable and open-minded. He lamented that no medical records here are kept digitally; all records are kept on paper! He studied in the UK and just returned not even four years ago here. He works in the QEH but also has his own practice. We asked if he might be interested in forming a nonprofit with Sofia,
and he agreed.

Mel with Sofia: Outreach to other families

Last, we drove some more to visit a mother—Melanie. Sofia told us she runs a “shop,” and I pictured a little boutique. Not even close; it was a roadside stand, the kind covered with tarp that sells chips and drinks. Mel’s little son Remel fought desperately to hide from me though it was more like a game. Nothing we did could entice him to stay still for a picture. This led to an instant bonding which was good. We all laughed
at ourselves trying to get Remel to be still. Finally I tricked him and as he turned the corner, caught him in a great shot. I jumped in the air and pumped my fist, and the mom, and the neighbors sitting and watching all applauded! It was great.

Melanie told us that she has nephews with hemophilia in Guyana. I said we knew two brothers, Laurence and Lloyd… and she said that is them! What a small world! We’ve been helping her nephews for a long time. Another bonding moment.

February 12, Wednesday evening. Sofia invited local families with hemophilia to meet us at our hotel for dinner. We were surprised at how many came, including two in wheelchairs—Jeffrey and Leemar, who we both sent factor to recently.

Dinner with Barbadian families

There was Kole and Kim, whose son Konnor has FIX—a handsome couple. Jeffrey, age 61, a real
hoot… great outlook and sense of humor. Ansley Marshall, with son Caiel. And Leemar, age 26, FIX with an inhibitor, so sweet, gentle and funny! Born only a month before my son, but
a world away. He has suffered horrifically. Jeffrey is his uncle. They both
spoke about what the pain was like: four nights, no sleep. You don’t want anyone
near you. No one can do anything for you to alleviate the pain. Jeffrey said,
“And you just pray for a few seconds, just a few seconds, of no pain so you can
have some relief.” The pain comes in waves, like the ocean that pummels the beaches
on this beautiful island. Leemar’s friend who brought him was interested and
asked questions. Such bright young men.

We took a photo, I paid the check for the dinner and drinks we bought for everyone, and promised to follow up with books and materials. I gave a pep talk about change and what they can do as patients and leaders to improve medical care and access to factor. But it wasn’t my best as my poor voice was at an end. But it was a great way to end a great trip.

The origin of the name Barbados?The name is Portuguese. The reference of the Portuguese to the island as Los Barbados (the bearded ones) is believed to describe the bearded fig trees on the island.