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Happy Hemophilia Mother’s Day!

When two mothers meet, whether they know one another or not, there is an instant bond and understanding. Thoughts, feelings and words flow easily, especially when it comes to the subject of children and childbirth, in other words, being a mother. For example, a man I worked with for two years never shared much personally. I happened to meet his girlfriend in passing; our eyes locked, we introduced one another and in 15 intense but pleasurable minutes covered children (we each have three), names, what their births were like in detail, school, how to juggle work and children, our divorces, how we handled dating… if we didn’t have appointments to get to, we would have chatted all night!

Add to motherhood hemophilia, and you have the ingredients for potent emotional bonding glue.

We all know hemophilia moms are pretty amazing. I’ve been meeting them for 30 years, all types: moms who are professionals, moms who are rich, moms who make minimum wages, single moms, moms of six children, moms of only children, moms who smoke, moms who are health fanatics, moms who are teens and moms in middle age. I’ve met them overseas: Africans, Asians, South Americans, both the rich and the deathly poor. When we meet, there is the bond of motherhood that instantly forms, but there is also the bond of motherhood of a child with hemophilia. We are not strangers to one another.

I thought back today to when I first became a mother: 1987, at the height of the public fear-frenzy and anger surrounding HIV. Our community was torn apart, and all eyes were on Washington DC and New York City, where the leaders were, deciding the fate of thousands. Thousands of mothers watched their sons died.

And other mothers like me were desperately fortunate not to have shared that fate. Yet we also took up roles in the aftermath. After all, a whole generation seemed gone; those young men who perished could have become hemophilia leaders in the community. Instead, it was the mothers who picked up the leadership mantle.

Think about it. About the roles of mothers then. There was a new generation of mothers who were called to serve the community, because so many young men with hemophilia could no longer do that. For the next fifteen years, I watched this new generation of mothers become leaders. You know their names: Michelle Rice and Dawn Rotellini of NHF; executive directors Debbi Adamkin, Michelle Kim, Heidi Forrester, Janet Brewer; and directors like Sonji Wilkes and Shari Luckey. Many others went to work for Pharma too.

The great thing about having mothers involved is that they can relate to the younger men as sons, and raise them up as leaders too. Some of their own sons have become leaders in the community. But someday, these mother-leaders will be retiring from the community, their mission completed, their children raised. The good news is that more and more, a new generation of patient leaders are coming of age and making their mark. That’s as it should be. From about 1987 to 2000 or so, we had no young men to learn leadership. The parents, mothers especially, had to step up. And now the boys and girls born during that era are here to learn…. And to lead.

Mother’s Day—not always happy, often bittersweet—is for the brave mothers who waged the war against HIV and whose sons were sacrificed, as well as for the mothers who became leaders to help steer the community into open waters of hope and a future where young men will be safe from harm. We thank you.

Have you heard? BleedingDisorders.com is all new

This is a paid public announcement from Takeda and does not constitute an endorsement of products or services. When you click on the links in this blog entry, you will be directed to a Takeda website. LA Kelley Communications always advises you to be a savvy consumer when contacting any company; do not reveal identifying information against your will.

As part of Takeda’s continuous efforts to support the bleeding disorders community, BleedingDisorders.com has been fully updated. It is now your go-to destination for information, tools, and support for living with a bleeding disorder. Whether you’re a patient or caregiver, the new and improved website provides valuable information for everyone.

New content with a fresh look
BleedingDisorders.com now lives and breathes Takeda’s mission—to put patients at the center of everything they do. Part of the purpose of this redesign was to bring together a wealth of bleeding disorders information while making it easy to find. You can now explore disease education, disease management, important life milestones, and information on physical and emotional wellness. The best part is that there are resources for people with hemophilia A, hemophilia B, hemophilia with inhibitors, von Willebrand disease (VWD), and other factor deficiencies.

Something you haven’t seen before
When you take a deeper dive, you’ll find the Living Well section has brand-new lifestyle information, ranging from diet, exercise, and travel tips to emotional health and pain management advice. These resources aim to help you live an active and healthy lifestyle while managing your bleeding disorder. Search a little further, and you will also discover new doctor discussion guides for talking with your healthcare provider about hemophilia, inhibitors, or VWD.

We’re in this together
With the relaunch of the website, Takeda wants to help you engage with other people living with a bleeding disorder. The Get Involved page has a community events calendar, links to connect on social media, and a place to sign up for updates directly from Takeda. Explore the Bleeding Disorders Community on Facebook, Instagram, and YouTube to stay up-to-date on the latest news, communicate with others, and share your story. Whether you’re experiencing a new diagnosis, managing treatment for the first time, or advocating for accommodations in the workplace, your story can be insightful to someone else in the bleeding disorders community.

BleedingDisorders.com makes it easier than ever to stay informed and proactive in managing life with a bleeding disorder. Discover what the new website has to offer, and you’ll be one step closer to making today brilliant!

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Hemophilia B: Her Voice, Her Life

SPONSORED CONTENT
 

This is a paid public announcement from Pfizer and does not constitute an endorsement of products or services. When you click on the links in this blog entry, you will be direct to a Pfizer website LA Kelley Communications always advises you to be a savvy consumer when contacting any company; do not reveal identifying information against your will.


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!

A Personal Approach to Healthcare

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Ever hear of personalized healthcare (PHC)? PHC means tailoring a treatment regimen specific to an individual patient. It acknowledges that every patient is different, with different physiology, biology, reactions to medicine, and lifestyle. A treatment regimen that works for one patient may not work for another with the exact same ailment.

The goal of PHC is to improve your quality of life as a patient with a specific disease or disorder, by taking into
account your individual needs and lifestyle, and then tailoring a treatment plan. How does that happen? It’s a collaborative process involving you and your medical team. Your HTC medical team knows all the treatment options, but you know yourself, your body, and your lifestyle. To develop your own PHC, you’ll need to share with the team every aspect of your past health, current health, needs, and desires. Only then can you all explore treatment options that best suit you.

Your Personalized Healthcare Team

The best place to get help with hemophilia and all bleeding disorders is at a hemophilia treatment center (HTC). These are centers of excellence that specialize in diagnosing, treating, and monitoring bleeding disorders. There are over 140 HTCs throughout the US. They follow the model of comprehensive healthcare, which means that they’re not just treating bleeding episodes, but all aspects of living with a bleeding disorder. From orthopedics to psychosocial needs to genetics, the HTC team knows how a bleeding disorder can impact your life.

By using comprehensive healthcare, isn’t your HTC team already implementing PHC?

Maybe not. First, not all HTCs are created equal. Some may lack certain experts you need, such as a pediatric hematology department or a geneticist. And some may have strong beliefs, different from yours, about when—or whether—to start prophylaxis (prophy), or about whether you should try new products.

Parents and patients need to become partners in PHC. Are they ready for this collaboration? Parents of newly
diagnosed children may be too shocked at first, and not even know what questions to ask. Older patients may be overlooked for PHC because they’ve been on the same treatment plan for a long time, their blood work is good, and they don’t complain or ask questions.

It’s important for you to be ready to partner with your HTC and let the team know your needs. But even if you’re comfortable standing up and being heard, what will you say? What will you ask?

1. CHOOSE THE RIGHT TREATMENT

One of the first decisions you need to make about your PHC is which treatment to use. All products licensed in the US are considered safe and effective, but they’re not all the same. How do you find one that’s best for you?

You know that new products are entering the market. You can choose between plasma-derived (made from human blood) and recombinant (made from animal cells containing human genes). Within the recombinant products, there are categories: first, second, or third generation. And there are novel therapies, that are not even factor! So begin by asking your hematologist for opinions on all products.

Your decision about treatment may come down to lifestyle, when selecting a particular brand for prophy. Perhaps the brand you’re using now, three times a week, works well for you or your child. Does a product with an extended half-life offer fewer infusions, saving veins from wear and tear? Or would you benefit from a new, subcutaneous product? Some products might not be available through your insurance. Talk through these choices with your HTC.

2. BLEEDING PATTERNS

Perhaps nothing is more personal than your individual bleeding pattern. People with hemophilia bleed differently, in different places, from different causes. Once your child begins getting bleeds, notice his bleeding pattern, if any. This is where you can really help your HTC team personalize your treatment. The information you share can help prevent a target joint from starting, or can compel the HTC team to put your child on prophy.

You may hear severity levels described like this: Children with severe hemophilia will bleed from trauma, or spontaneously, with no known trauma. Children with moderate hemophilia may bleed on average once a month, with known trauma. Children with mild hemophilia may bleed only after dental extractions and surgery. But what’s the reality? Some children with severe hemophilia bleed only monthly; some with moderate bleed every week, with no known trauma. Your child’s bleeding is unique!

And know his personal symptoms of a bleed: Tingling? Hot? Swollen? Your HTC staff can help you identify symptoms, so you can infuse more quickly at the first sign of a bleed.

3. ESTABLISH A TREATMENT REGIMEN

Personalized healthcare really shines when it’s time to devise a treatment plan. You can use the new, subcutaneous novel therapy. Or you have two options for infusing factor: on-demand (also called episodic) or prophylaxis. On-demand means infusing at the first sign of a bleed. Prophy is the scheduled infusing of factor. It’s designed to keep factor levels in the bloodstream high enough—greater than 1%—to prevent most spontaneous bleeds.

Prophy is the recommended therapy for children with hemophilia in countries like the US with ready access to clotting factor.

And what about your schedule for prophy? This is about as personal as PHC gets! Your HTC team will offer a schedule based on your child’s needs: your family lifestyle, activity level, perhaps pharmacokinetics (PK) data to determine how quickly factor is cleared from the blood after an infusion, and any breakthrough bleeding that might happen.

4. DISCUSS PERSONALIZED MEDICINE

Personalized healthcare is not the same as personalized medicine, a common term. Personalized medicine often refers to using a person’s genetic profile—genomes and specific genetic markers—to guide therapy for cancer and other diseases and disorders, including hemophilia. But PHC includes personalized medicine, and it’s worth discussing with your HTC team because more and more, the hemophilia community is focusing on personalized medicine.

National Hemophilia Foundation (NHF) recognized the importance of this genetic research and launched My Life, Our Future (MLOF). Through this program, you can get a blood test that enables you to learn more about the specific genetic mutation that caused your child’s hemophilia.

So PHC uses personalized medicine to examine your genetic makeup, help predict which medical disorders or diseases your child is most at risk for, and suggest which treatments will be safe and effective (or not) for him. This is particularly important for complications like the risk of getting inhibitors.

We’ve shown you examples of treatment and lifestyle areas to focus on, potential needs to address, and questions to ask your HTC team to design the best life possible with your bleeding disorder. Your HTC team will become one of your most important partners.

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