Share Your Story!

“After nourishment, shelter and companionship, stories are the thing we need most in the world.” 
As a writer, I tend to agree! Whether we are imparting facts or weaving a tale, we seem to learn best when we hear it all as a story. Stories are especially important for families dealing with bleeding disorders. We all want to hear the Introduction (Beginning), the Conflict and the Climax (Middle), and the Outcome (End). And we want to hear lots of stories because our own story will mirror one someday.
Grifols, manufacturers of plasma-derived clotting factors, is offering a chance for you to tell your story, to help other families who have hemophilia or von Willebrand Disease. 
Visit to share your experience and provide inspiration and motivation to others seeking ways to better manage their bleeding disorder.
Your story may be featured on the newly launched consumer website , and may also be selected to be shown in the Grifols booth at the National Hemophilia Foundation conference in Dallas, Texas in August!
As I always advise, please read the privacy notice on the site before sharing.
This is a paid public awareness notice from Griflols.

Great Book I Just Read

Anthem by Ayn Rand [Kindle]

If you want to know what the legendary Ayn Rand, who grew up in Stalinist Russia, believes in a nutshell, read this novella. In this futuristic story, people’s names are replaced by genres and numbers (Liberty 5-3000), humanity has all individuality stripped away, and a collective society emerges. The word “I” is banished, even when referring to oneself. The narrator knows he is different but is not sure how or why. He knows he is not meant to be a street sweeper, as the Elders dictate to him. He has no parents, no family–no one does. His life is controlled by Elders from beginning to the day he dies. He refers to himself as “we,” and is raised to serve the common needs of all. Until one day he discovers an underground place where electricity works–apparently a subway or city from before the end of days. Excited, he shows the Elders but is shunned and shamed. He decides to return to the place, try to make sense of what has happened to mankind and why such technology is being ignored, to improve the lot of the common worker. In the process, he discovers himself, love, his convictions and a future as an individual. A very short read, with powerful and rich ideas about individualism to think about.  Five/five stars.

America’s “First Family” With Hemophilia

Last week I wrote about the most famous carrier of hemophilia, “Young Victoria,” and that got me thinking that we have our own royalty, America’s first family with hemophilia, the Appletons. This article is from a 2002 issue of PEN, and well worth reading! And, I live about 15 minutes away from the family farm!

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 Appletonsin 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.

From the November 2002 Issue Parent Empowerment Newsletter
THE APPLETONS: America’s “First Family” With Hemophilia
by Richard J. Atwood and Sara P. Evangelos
© 2002 LA Kelley Communications, Inc.

Good Book I Just Read
Anthem by Ayn Rand

Now, you must know many Teabaggers are citing author Ayn Rand and her philosophy at meetings, on blog sites, etc. Politics aside, I happen to like Ayn Rand a lot. I decided to read this little gem, published in 1947. A daring, thoughtful, if often campy piece, it is a good vehicle for a discussion on Rand’s theory of objectivism.

Anthem is a diary by someone who is in a society of the future, where apparently communism reigns. People are told when to mate, are separated from their babies, told what they will be when they mature. And the word “I” does not exist. Some cataclysmic event wiped out civilization and humankind starts over, with communism at its core. One man, “Equality 7-2521,” realizes he is different and despite being warned not to be, is curious, daring and ambitious. He wants out. One day while acting in his role as street sweeper, he finds a tunnel, which leads to an underground world long forgotten, and every night, sneaks away to explore. Little by little he uncovers the secret of humanity’s past.

A quick read (I finished it in 90 minutes) it has plenty to think about and discuss in book clubs. It’s a bit dated of course, but it’s still worth a read! A forerunner to the TV series “The Prisoner,” I suspect. Three stars.

HemaBlog Archives

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