I’m in India this week—amazing India—to meet a group of lovely and inspiring women. These are the ladies of Tamil Nadu, the southern-most Indian state, the tenth largest Indian state by area and the sixth largest by population. It’s famous for its Hindu temples; its capital is Chennai, formerly known as Madras. While I’m here for primarily a meeting with a particular hospital where I’ve been assisting with surgeries, my colleague and longtime friend Usha Parthasarathy suggested I come early to meet the ladies of Tamil Nadu.
The ladies just formed a women’s group and had not yet met. This was the weekend! At small resort on the Bay of Bengal, nineteen women connected with hemophilia journeyed to meet one another. Some were mothers of children; some married a person with hemophilia; one was a young lady who has hemophilia. All were anxious to meet.
The weekend started with a puja, a ritual ceremony honoring the gods and also kicking off the celebration of meeting. We gathered round a chalk-inscribed design and lit small oil lamps; Ambika, a pro-active mother, sang a prayer. It was very moving and beautiful! Then we sat in a circle and played a game: each person paired with another and asked each other questions to learn who they were. They later had to repeat all they learned about the other person.
Later, Ambika explained that the meeting was called “Sunflowers of Hope” because the sunflower doesn’t always need rain or sun. It can draw nourishment from the sunflower next to it. What a great analogy to this meeting of women! And it’s why we dressed in yellow.
The most poignant moment for me was when one mom approached Usha and Amika. I could see them talking softly to her and moments later bedecked her with pretty earrings. Indians love their jewelry! The mom started crying and they all hugged. But what caused this?
Usha told me how her teen son with hemophilia had died just two years ago. Recently she was with relatives, who criticized her for wearing gold earrings. She should be in mourning, not wearing jewelry! Well, this is where a women’s group can work wonders. Usha and Ambika brought out a gift they had for her—beautiful new earrings. They supported her decision to wear them.
The rest of the weekend was learning: about leadership, advocacy, hemophilia, gene therapy and more. There were more games and workshops. The women seemed like best friends by the end.
But of all the marvelous things that took place this weekend, nothing could compare to the earrings. Such profound loss, such a simple act of kindness… and a mother now has strength to face her judgmental relatives. All because she was found the power of women who band together, the ladies of Tamil Nadu.
December 1 is World AIDS Day; this blog today is dedicated to sharing more about that history through a book review by our esteemed historian Richard Atwood of North Carolina. The bleeding disorder community was deeply harmed and impacted by the spread of HIV through the nation’s blood supply in the late 1970s and early 1980s. We lost about half of our 20,000 population, with many more surviving with AIDS and/or hepatitis C.
Some statistics: About 88.4 million people have been infected with HIV and about 42.3 million people have died of AIDS. Globally, 39.9 million people were living with HIV by the end of 2023.
The book is Blood and Steel: Ryan White, the AIDS Crisis and Deindustrialization in Kokomo, Indiana, by Ruth D. Reichard. The 242-page book was published in 2021.
Richard writes:
Ryan White was born on December 6, 1971 in Kokomo, Indiana, a mid-sized American city. His mother, Jeanne White, had hemorrhaged and Ryan was subsequently diagnosed with hemophilia, so both were referred to hematologists in Indianapolis. A sister, Andrea, was born in 1973, the same year that Ryan became the poster child for the Howard County Hemophilia Society. Jeanne divorced, remarried, and moved to Windfall. Following a second divorce, Jeanne, as a single mother with two kids, moved back to Kokomo in 1984. Ryan attended Western Middle School in nearby Russiaville. He was diagnosed with AIDS in December 1984, becoming the 31st AIDS case in Indiana and the second case in Howard County. Rather than hide his AIDS diagnosis, Ryan bravely chose to be open about it. Ryan wanted to attend school, but some local activists wanted him barred from public schools. When Ryan returned to school on February 17, 1986, the Continental Steel Company locked its gates.
After 90 years as the largest employer on a 183-acre site in Kokomo, Continental Steel was bankrupt by 1980, then in Chapter 11 proceedings, that led to liquidation through Chapter 7 proceedings. Local residents were unaware that the former steel plant would become a Superfund toxic site due to massive chemical pollution that endangered the environment and the health of the workers. Certain citizens, instead, reacted to the “toxic” threat of a boy with hemophilia and AIDS wanting to attend school by bringing lawsuits to bar him. There was more national news about one boy than about an entire unemployed work force.
Ryan, the innocent and blameless victim, became a poster child for AIDS. Following reversed court decisions in 1986, Ryan entered the 8th grade at Western High School. Due to failing health and not being eligible for AZT, plus animosity at school, Ryan moved with his family to Cicero in 1987 to attend Hamilton Heights High School, where he was accepted. The Ryan White Story, a made for television movie, was shot in Statesville, North Carolina, then aired in January 1989. Ryan interacted with many celebrities. Ryan died on April 8, 1990 at age 18. Jeanne finished Ryan’s co-authored autobiography before she advocated in Washington for the Ryan White CARE Act of 1990. Jeanne remarried in 1992 and later moved to Florida. The Children’s Museum in Indianapolis created The Power of Children exhibit that preserved Ryan’s bedroom and told his story. Kokomo did not memorialize Ryan, while Cicero did. Kokomo turned the former Continental steel plant site into soccer fields.
Richard adds: This text, that compares and contrasts historical biographies of both a boy with hemophilia and AIDS and a failed steel factory, includes 27 pages for Chapter Notes, 10 pages for a Bibliography, 12 pages for an Index, and two photographs on the cover. The city of Kokomo reacted more to the toxicity of a boy with AIDS than to the toxicity of a polluted industrial site. For both Ryan and Continental Steel, there were multiple legal battles fought in the courts, the health system, and the educational system. Each chapter in the book contains sections on Blood, Steel, and Ryan White to reveal the ongoing events for both historical biographies, mainly from the 1980s, with updates to the present. The complex legal issues are clearly described and interpreted. The author, both an attorney and a historian, lives in Indianapolis, Indiana.
It’s Thanksgiving week in the United States, and living in the Boston area, one cannot help but think of how our country was first founded, and by who. When I travel just 15 minutes from my house to Newburyport, Massachusetts, a lovely seaport city, I can read plaques on the houses that read “1820,” “1775” and even “1656”! Many of these houses have existed since before America was born! Boston is the birthplace of our country, and Massachusetts is naturally a state of many firsts.
It was in Plymouth, Massachusetts that the Puritans landed; and here that the settlers weathered the severe first winters with help from the native tribes. And it was here that the first person with hemophilia was born in the US! In fact, I can travel 15 minutes from my house and see where he lived.
I run the following article almost each year, so we can remember this famous “first” family in the US: enjoy!
New England, 1639. Imagine that you are standing on the deck of the sailing ship Jonathan. You have just glimpsed the shore of your new home, the Massachusetts Bay Colony. Imagine the brilliant New England foliage, the bright chilly wind. Imagine your dream of farming your newly acquired land. Imagine the adventure. Now, imagine that you are the first European with hemophilia to step on the North American shore.
John Oliver (1613–1642) traveled from Bristol, England with his family to settle under the leadership of the Massachusetts Bay Company. He lived for only three years after he reached North America, fathering one child, Mary, and dying young as a consequence of his hemophilia. Not until after 1800 did the medical community begin using the term hemophilia to describe his disorder. John’s daughter, Mary Oliver (1640–1698), was likely the first hemophilia carrier of European descent born in the colonies. With her husband, Major Samuel Appleton, Jr. (1625–1696), Mary had three daughters and five sons. One of these sons, Oliver Appleton (1677–1759), was the first American colonist born with hemophilia!
Early Ipswich Roots Mary and Major Appleton lived in a settlement known to native Americans as Agawam, but re-christened by the English in 1633 as the town of Ipswich. What would life in Ipswich have offered their son, Oliver Appleton? Thirty miles north of Boston on the Atlantic shore, Ipswich was owned by the Massachusetts Bay Colony; it was purchased earlier in the century from Native Americans for 20 British pounds. By the mid-1600s, Ipswich ranked second only to Boston in population and wealth. The Appletons were a wealthy colonial family. Major Samuel Appleton, Jr., Oliver’s father, was the son of Samuel Appleton Sr., one of the “landed gentry,” and a good friend of John Winthrop, the first governor of the Massachusetts Bay Colony. Appleton’s fertile 460 acres of farmland had been granted to him by the Colony in 1638, and left to his son, Major Appleton, around 1670. Major Appleton, who served as a judge at the infamous Salem Witch Trials in 1692, died in 1696. He left his now nearly 600 acres, split into four parcels, to his four sons: Oliver, Isaac, Samuel and John. Oliver’s 100-plus acre inheritance included his father’s sawmill, ox pasture, and farmland bordering his brothers’ parcels.
In 1701, Oliver married Sarah Perkins. Well-to-do millers, farmers and traders, Oliver and Sarah possessed numerous household and farm goods. They were involved in local politics, church affairs and business. Together they raised fourteen children; several sons and their descendants would become fine cabinetmakers. At the turn of the eighteenth century, Oliver and his three brothers were working their adjoining farms in a loosely communal style. Each brother might grow a crop that the other brothers could use. Yet each brother farmed separately, produced his own goods for trade (like basket hoops), and kept his own business ledger. The brothers owned cattle, sheep, turkeys and hogs, and traded goods with family and friends in Ipswich.
A Dangerous Occupation? On their “new” land (already cleared and cultivated by Native Americans), the Appletons cut and milled timber, raised livestock and worked the farm. Today, farming is still one of the most dangerous occupations. In the seventeenth and eighteenth centuries, its hazards were surely compounded by Oliver’s hemophilia, and the harsh New England winters. Yet Oliver lived to be 82—a considerable age in any century.
Late in life, Oliver was confined to his bed and developed bedsores on his hips. At age 82, his cause of death is recorded as bleeding from his bedsores and his urethra. Oliver appears to have been a generous and fair man, dividing his estate equitably among his children and his wife Sarah.
Making Medical History Oliver and Sarah had six daughters and eight sons. Two of the daughters, Sarah and Hannah, had sons with hemophilia. Interestingly, Hannah’s sons, Oliver and Thomas Swaim, were doctors. What would they have thought of their family’s disorder?
Without letters or other documents, we can only guess. Yet it was the Swaim branch of the Appleton family that attracted the attention of the medical community. Based on his personal connection with the Swaim family, Dr. John Hay, a Massachusetts physician, published an article on the Appletons in a New England medical journal in 1813. Following this publication, the Appleton family history appeared in numerous medical journals, at least as late as 1962. By then, the family had been traced through 350 years and 11 generations: 25 males with hemophilia, and 27 carrier females. In 1961 a blood sample, drawn from the last known living carrier in the family tree, revealed factor VIII deficiency, or hemophilia A
Are the Appletons America’s “First Family” with hemophilia? Perhaps, in the sense that our knowledge of hemophilia has been enriched by the study of this large and long-lived colonial family. Thanks to our American Revolution, we have no “royal family” with hemophilia. Yet we can still honor and remember the Appleton family. This Thanksgiving, we can recall the challenges faced by earlier generations with hemophilia—people who contributed to our heritage as Americans, and as a hemophilia community. To understand ourselves, and create our vision for the future, we must always remember the past.
My name is Angelo, and I am living with hemophilia in the Philippines. This condition has been a constant companion in my life, presenting unique challenges that not everyone fully understands. Hemophilia affects how my blood clots, making even minor injuries a potential crisis. This is my story of resilience, hope, and the invaluable support I’ve received from people who truly care.
Despite all the care and infusions, the aftermath of those hospitalizations left my veins delicate, making IV insertions a struggle. Even a 22G cannula, a larger-than-average needle, now poses challenges, often requiring multiple attempts to find a usable vein. I recall one hospital admission where a series of failed attempts to secure a line left me feeling exhausted and stressed. It was a wearisome experience, physically and mentally. Fortunately, my compassionate hematologist at the time understood my situation and allowed me to go home after a few successful transfusions, even though my hemoglobin levels were still below ideal. This was a small victory in a long and difficult battle.
Since my last hospitalization in 2017, I have managed my condition at home. I often choose to bear the pain of bleeds rather than face the struggles of another hospital admission. The thought of being poked and prodded again is daunting, so I’ve learned to cope with my condition as best as I can. My condition has also affected my mobility, I require crutches for support, relying heavily on my upper body to assist me in standing. Both of my feet, especially my right one, are significantly slanted and cannot lie flat on the floor, complicating my ability to move around. My knees, particularly my right knee, are severely restricted in movement, adding yet another layer of complexity to everyday life. Simple tasks like walking or even standing for long periods can become exhausting, and I often have to plan my day around my physical limitations.
Despite these struggles, I am deeply grateful for Hemophilia Advocates- Philippines (HAP), our hemophilia organization here, which has been a lifeline during emergencies. Their support has been crucial in moments when I needed help the most. Over the years, I have requested assistance for factor multiple times, with my most recent request made last October. Unfortunately, it was not granted due to low supplies that are only allocated for emergencies. While it was a challenge, I remained hopeful, knowing that support comes in many forms. In light of the situation, I turned to Ma’am Laurie Kelley, a compassionate individual known for her generosity. I shared my situation with her, and to my relief, she kindly offered to send me factor herself. Her willingness to help reminded me of the goodness that still exists in the world.
Living with hemophilia in the Philippines, where medical assistance for rare bleeding disorders is scarce and costly, has been a constant challenge. The healthcare system here is often strained, and access to specialized treatment can be limited. Although I am employed, the average salary here makes it incredibly difficult to afford the necessary treatments on my own. I sometimes worry about the future and how I will manage my condition without the support of others. Yet, through the relentless support of people like Rev. Fr. Kill, Ma’am Laurie, and HAP, I continue to find strength and hope. Their kindness has taught me that I am not alone in this fight.
This journey has taught me to appreciate every act of kindness and to stay resilient. I have learned that, while my condition presents many challenges, it has also brought extraordinary people into my life. For those of us with rare conditions, even small acts of understanding and support can make all the difference. It’s these connections that give me hope for a better tomorrow, where I can live my life with dignity, strength, and the support of those who care.
Valencia, Spain was ripped with a horrific flood this week, comparable to the effects of a tsunami. At least 205 are known dead and the count will surely climb. In the US, we recently had Hurricane Milton, one of the deadliest storms to hit Florida on record. Recently there were also floods in Nepal and the Sudan, and a hurricane in Mexico and again, Florida.
It’s a reminder to be prepared for disaster scenarios. These disasters are promoted on the news frequently, and may point to climate change as storms seem to be more intense and severe. Whatever the cause, there are many things you can do as a bleeding disorder patient and family to be prepared for catastrophe.
First, know the geography and weather patterns wherever you live. California has many geographical faults that cause earthquakes; wildfires are particularly bad. The midwest states of Texas, Nebraska and Kansas are dubbed “tornado alley” for their frequent and sometimes devastating tornadoes. The northeast has “nor-easters” every ten years or so. And Florida, as we’ve seen recently, is hit with hurricanes that often originate off the coast or in the Caribbean Sea.
On the east coast, we know that September and October are hurricane season moths. Normally we are lashed with the tail end of a Caribbean-originated hurricane. We once had “The Perfect Storm,” a 1991 hurricane that struck on October 28, and became a massive killer. Damage was most severe in Massachusetts; the story became a movie of the same name, starring George Clooney. We ensure we are stocked with wood for a fire, shovels, spare food—even snowshoes!
Second, always ensure you have enough factor and ancillaries. When storms hit, you often are not able to travel, and face power outages. Your factor supplier may not be able to bring you factor, and you may not be able to contact them. Keep at least 10-20 doses in your fridge at all times, and plenty of ancillaries.
Third, keep candles and flashlights ready, with fresh batteries. Keep your cell phone charged, and have a power bank charged and ready if your phone runs low on power.
Finally, know your local emergency numbers, in case you need to be evacuated due to your medical condition. Callers have overwhelmed 911 services, so you may not be able to always reach help when you need it.
As soon as you hear that a storm is developing, even if it is in Florida and you are in Massachusetts, be prepared for a worst-case scenario. Keep updated with popular apps like RadarOmega, Radarscope, and the FEMA App. Ask your local bleeding disorder organization what they suggest for being prepared and for help during a natural disaster.
Don’t wait till disaster strikes! Don’t be caught unprepared.
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