November 2019

Exploring New Worlds When You Have Hemophilia: John Oliver

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By Richard Atwood

Have you ever thought of traveling overseas?

A benefit of current treatment of hemophilia is the freedom to safely travel. This was not always possible before the use of factor concentrates. Now with just a few precautions, such as carrying a medical ID, a letter from your hematologist, and a travel case of factor concentrate with necessary supplies, along with your passport and a credit card, you can easily travel to many destinations in the world.

Suppose you wanted to travel across the Atlantic Ocean from England to America. Today you could take a five-hour flight from London to Boston. Now compare that to the voyage of John Oliver (1613-1641), the first recognized individual with hemophilia to travel across the ocean almost 400 years ago. Newly married in 1639, Oliver left England to settle in the Colonies.

John Oliver born in Bristol. The eldest child of James Oliver (1586-1629) and Frances Cary (1590-1635), Oliver had two sisters and two brothers who lived to be adults, and possibly three sisters who died as children. It’s unknown whether a family history of hemophilia existed. At 16, Oliver was apprenticed for eight years to his uncle, Walter Stephens of Bristol, a dealer in textile fabrics. Oliver belonged to a multigenerational extended family of seemingly prosperous merchants.

By 1639, Oliver finished his apprenticeship and received his inheritance after both parents died. His 22-year-old brother James died that year, allowing the speculation that he had hemophilia. Oliver received his brother’s inheritance of £50. After marrying Joanna Lowle (later spelled Lowell), Oliver, at age 26, packed their belongings. Then accompanied by his in-laws, the couple probably traveled by wagon to London, where everyone boarded the Jonathan.

The Jonathan was about 100 feet in length with a capacity of 200 to 300 tons. There were two or three small cabins for important passengers plus a hold for 100 passengers (with maybe room for cattle on the deck). There were over 50 individuals who were aboard. A regular fare was £5 (around $4 in today’s market) and a cabin cost £17, plus £8 for one group’s luggage, and even more for food.

Sailing under Master John Whetstone, the Jonathan departed London on April 12, stopped briefly in Southampton, and arrived in Boston Harbor on June 23. A voyage across the ocean at that time was expected to take six weeks. This trip lasted over nine weeks, indicating bad weather or other problems. Some of the passengers died on board from childbirth complications, infant illnesses, and possibly infectious diseases. Sanitary conditions were most likely impossible to maintain, and food supplies were limited.

John Oliver traveled in a party of 17 led by his father-in-law Percival Lowle (1571-1665), an importer and merchant in Bristol. Lowle was accompanied by his wife, his two married sons and their families, his two married daughters and their families, plus business associates and apprentices. This was the beginning of the prominent Lowell pedigree in New England. (The city of Lowell is named after them, and is home to University of Massachusetts Lowell.)

Soon after arriving in Massachusetts Bay Colony, Oliver and his wife settled in Newbury, about 35 miles north of Boston. The couple bought house lots and arable lands, meadows, marsh, orchard, fences, privileges, and commons from Mr. Stephen Bachelor and Christopher Hussey for six score pounds. Oliver was a merchant of imported goods from England, probably working from his home. In 1640, he was admitted as a Freeman and his daughter, Mary, was born. The next year he was chosen to serve on the General Court appointed commissioners for small causes in Newbury.

Oliver must have died in January 1642, probably due to complications of his hemophilia, leaving an estate worth £420 in lands and goods. In 1645, his widow married Captain William Gerrish, another merchant who traveled in the Lowle party. Later in 1656, 16-year-old Mary Oliver, a hemophilia carrier, married Major Samuel Appleton Jr. from that prominent New England pedigree in Ipswich. Their marriage started the extensive Appleton-Swain pedigree of hemophilia A in Massachusetts—the first known family with hemophilia in the Americas.

Today we are often critical of air travel. High cost, lack of leg and elbow room, inadequate bin size, rude passengers, extra charges, security checks, long delays. Consider what John Oliver had to endure during those nine weeks he was aboard a ship to appreciate how we travel today in airplanes! Yet like Oliver, we also have to pay extra for luggage and food, so some complaints about traveling seem to persist forever. But don’t let that hinder your travels abroad!

Bombardier Blood in Utah!

When our team was dividing up who will represent Save One Life at various showings of "Bombardier Blood," the incredible movie about Chris Bombardier's Seven Summits Quest, I jumped at going to Utah. Utah is one of my favorite places: drenched in southwest colors of red and yellow, with soaring mesas and fins, and deep, rich canyons, it's an adventurer's dream. It seemed to fit the message of the movie, too: go out. See the world. Climb, hike, walk, smell fresh air, dream, do.

After spending a week exploring Antelope Island, Moab and Zion, I headed north on I-15 and reached Salt Lake City. The Utah Hemophilia Foundation's executive director Scott Muir was there to greet me. And not only greet me, but to give me the gift of his paintings, bound as photos in a hardcover book! All the paintings are of Zion National Park, which he well knows I adore. Scott is a talented photographer and artist.

And apparently, executive director! We had a huge turnout for the event. About 150 or more families arrived to socialize, have dinner, enter raffles and engage with the various pharma and specialty pharmacy vendors. I was so happy to meet up with long time friends, colleagues and Facebook friends (some of whom I have not yet met in person). There were so many children, and while you might think their presence might disrupt a movie, the children were as good as gold.

I gave a few words before the movie started, and let the audience know this amazing stat: out of the 108 billion people who have ever walked this earth, less than 500 have ever accomplished all Seven Summits. I'm not sure you can easily even measure that! The audience was hushed as the movie began, and for 90 minutes, were riveted to the screens.

Laurie Kelley and Scott Muir

After the movie, one 14-year-old asked me a very leading question: how did Chris keep his factor warm on the mountain? "Why don't you ask him yourself?" I replied. His eyes lit up! Chris must seem like a hero to so many, and thus, out of reach. But he is very approachable. The young teen was thrilled to get Chris's email address, and I had to ask him: was he interested one day in doing mountain climbs? He nodded his head vigorously and smiled! Come join us, I invited him!

And coincidentally, Save One Life will be hosting a three-day hike to the bottom of the Grand Canyon in 2020!

Bombardier Blood is about making dreams come true, and if you can see it at your local chapter, please do! You may believe anything is possible.

Thanks to Utah Hemophilia Foundation for hosting this movie, and to all who sponsored the event. Special call out to Octapharma, which sponsored Chris's last two and most expensive climbs, and for daring to take a risk on a young man with a big dream. Sometimes the riskiest adventures yield the greatest joys and successes!

Bombardier Blood was created by Believe Ltd, and is now produced by Alex Borstein. It showcases not only Chris's climbs but also the disparity of treatment in bleeding disorder between developed and developing countries, being addressed through the work of Save One Life.

A Star is Born

Continued from last week; a profile in leadership. Andrea Trinidad, woman with VWD, who is changing lives for all with bleeding disorders in the Philippines. Reprinted with permission from Jojo Silvestre, the Daily Tribune. https://tribune.net.ph/index.php/2019/04/30/ambassador-for-bleeding-disorders/

Star was born with bruises all over her body. At three weeks old, she had a nosebleed that prompted her parents to take her to the emergency room.

Andrea told the doctors that her family has a history of bleeding on both sides. A nephew from her father’s side just got diagnosed with severe hemophilia.

“‘No, she can’t have hemophilia. She is a girl,’ the doctors told me,” recounts Andrea.
Star grew up having at least one nosebleed episode every week. On bad days, she would nosebleed daily. Finally, in 2006, Andrea brought Star to Hong Kong. It was there that she and Star were finally diagnosed with a bleeding disorder called Von Willebrand Disease (VWD).

More common than hemophilia

Hemophilia, VWD and other inherited bleeding disorders have similar symptoms — bruising, nosebleeds, gum bleeds, excessive periods, to name a few. While hemophilia is the most known bleeding disorder, VWD is actually the most common. According to the WFH, VWD affects roughly 1 to 2 percent of the population.

“That was also when I realized that there are very limited resources here for people with bleeding disorders,” Andrea shares. “Managing bleeding disorders is expensive. But the scarcity of medicines — the factors — is something that truly surprised me. That even if you have the capacity to purchase these medicines, there are times you can’t find enough supply.”

Andrea soon started a blog to share the family’s experiences and in some ways, reach out to people around the world who have the same bleeding disorder. She was surprised by the amount of attention her blog received and the number of people who linked up with her. She then saw an opportunity to learn more about rare bleeding disorders and share with others whatever knowledge she could gather. It opened a whole new world for her.

Founding Hemophilia Advocates

In 2008, Andrea met Laurie Kelley, founder of two humanitarian programs — Save One Life and Project SHARE. Laurie came to the Philippines to do a fact-finding mission to gather data on the situation of persons with hemophilia in the Philippines. She invited Andrea to come along. It was an eye-opener to the very sad situation of Filipinos with bleeding disorders. She vowed to help the community and became a local volunteer for Project SHARE and Save One Life.

In 2011, she was invited to become an ambassador for My Girls Blood, a US-based non profit specifically aimed at raising awareness that women can also be affected with bleeding disorders.

In 2016, Andrea along with four others, founded Hemophilia Advocates-Philippines (HAP). The group’s main goal is to push for government-funded treatment for people affected by bleeding disorders.

“Hemophilia and bleeding disorders are lifelong but manageable. If we have access to treatment, we can lead normal lives,” she says.

But that is not so for most affected Filipinos. Treatment for a simple, non-life-threatening bleed, such as internal bleed in the joints, could cost around P100,000 for a single infusion for an adult.

Through the network Andrea helped to build among donors and beneficiaries, HAP has been able to bridge that gap. International organizations, such as Project SHARE, send medicines to HAP, which in turn, distribute to those who badly need them.

Global ambassador

Andrea’s personal advocacy has brought her to different parts of the globe, at her own expense, to link up with other organizations, so she could learn more about it and also seek help for the less privileged Filipinos who also have the bleeding disorder but don’t have the means to get treatment.

“Being an advocate has helped me more,” Andrea says. “Our journey with von Willebrand Disease is no longer as lonely as it used to be. We now belong to a real community of people who ‘speak the same language.’”

When Facebook introduced the Facebook Group, Andrea started a support group, which then became the HAP, which celebrated its second anniversary recently. Aside from providing factors, the organization also helps empower patients through scholarships and business opportunities.

Legislative advocate

Since she started the blog, Andrea worked nonstop with her advocacy. Today, she is busy lobbying for the passage of Senate Bill 1335 or the “Bleeding Disorders Standard of Care Bill,” which seeks to give free treatment for persons with bleeding disorders such as hemophilia, VWD and other inherited bleeding disorders. The bill also seeks the establishment of Hemophilia Treatment Centers across the country.

She also hopes that through the proposed bill, medicines, especially donated factors from overseas, will reach its recipients the soonest possible time.

Andrea and her daughter still occasionally need blood transfusions but she no longer feels helpless unlike before. She is able to live with the disorder while seeking help for others at the same time.

“If I wanted to, I can just focus all my energy on me and my daughter,” she says. “But I believe that I inherited this disorder for a reason. For as long as I can, and for as long as the hemo community needs me, I will continue with my advocacy of helping them.”

Ambassador for bleeding disorders

Excerpted with permission from an on-line article by Jojo G. Silvestre

World Hemophilia Day [April 17] is an international day of observance of which not many people seem to be aware. I am one person who may have a better understanding of bleeding disorders, a unique yet quietly widespread human malady only because my dear friend, Andrea Hernandez Trinidad, president of Hemophillia Advocates-Philippines, internationally-recognized as the face of hemophilia in the Philippines.

I met Andrea in the early years of the new millennium. A former newspaperwoman whose stories appeared on page one of a top daily, she shifted to public relations and, not unexpectedly, was very warm and friendly. It turned out it was not for convenience and business purposes that she had a ready smile. This was one lady, I soon realized, who was sincere in her dealings with others and whose friendliness is not dictated by the so-called exigencies of her profession.

Andrea, from day one of our friendship, had been one socially-confident, articulate and smart gal who dressed up properly (her style could be powerful at one time, sporty the next, or glamorous when the occasion called for it), laughed with gusto and listened attentively. Ours has been a two-way traffic, although I must say I’ve been more on the receiving end (ha ha ha) because, well, she has so much to give and I just don’t mean the “pasalubong” (gifts from travels) that she showers me with whether she needs me to edit something or not.

Managing bleeding disorders is expensive. But the scarcity of medicines — the factors — is something that truly surprised me. That even if you have the capacity to purchase these medicines, there are times you can’t find enough supply.

Although this may be late for World Hemophilia Day itself, I am focusing on her and her special cause — the promotion of awareness of bleeding disorders so that those who suffer from them would be given suitable and timely support which can be best institutionalized through legislation.

According to the website of the World Federation of Hemophilia (WFH), the organization, this year, “is focusing on reaching out and identifying new members of the bleeding disorders community. The WHD 2019 campaign will feature examples of WFH outreach initiatives such as organizing regional workshops, raising awareness of bleeding through media coverage or training health professionals and collecting data. It will combine these examples with submissions from our community about outreach efforts in their own regions or ideas about what would be helpful for future initiatives.”

Andrea comes from a family of public servants in the Visayas. Her maternal great grandfather, Jose Lopez-Vito, was a Supreme Court Justice. On the other hand, her paternal great grandfather, Vicente Vergara, was the first Mayor of Guihulngan, a locality in central Negros.

Her own father, Jesus Trinidad, was a long-term councilor and currently, two of her siblings and few cousins hold different positions in government.

Andrea and her five siblings were practically raised by their mother, Sofia, single-handedly, because their father was a martial law detainee in the 1970s and had to leave his family to work elsewhere after his incarceration.

Andrea remembers seeing her mom having bad monthly periods. Many times she would be confined to bed. She recalls, “In 1988, her bleeding became so bad that doctors wanted to run a biopsy on the lump on her uterus. She didn’t survive the supposed simple operation.

“My mother literally bled to death while undergoing biopsy operation simply because the condition was still unknown in the Philippines at that time,” recalls Andrea.

If it was devastating to the whole family, Andrea would later find out that she had inherited the disease. No wonder that as a teenager, she had a bleeding disorder.

She also experienced multiple bleeds every time she was pregnant, so all her three children were born prematurely. But it was not until her youngest child, Star, was born that she finally suspected that a bleeding disorder runs in her family.

Next week, Part 2: A Star is Born!

From: https://tribune.net.ph/index.php/2019/04/30/ambassador-for-bleeding-disorders/

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