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Grand Evening for a Gala

Laurie Kelley October 9, 2016

It was a chilly and moist evening in
New York City on September 29, perfect for a fall kick-off and a good reason to
warm up with friends, colleagues and a celebrity to honor 15 years of Save One
Life.

Save One Life was founded in 2001, but
my idea to start a nonprofit to help the world’s children with hemophilia who
live in poverty had been kicking around for at least two years. We are now up
to over 1,500 served over 15 years, and we have great plans to expand our help even further.

It was fitting to hold our celebration
in New York; to give credit where it is due, it was a New York mother of a
child with hemophilia, Lisa O’Connor, who wrote to me back in 1999, on a piece
of yellow-lined paper (yes, people did that at one time!) to suggest we start a
Save the Children-like program. I loved the idea, and the letter coincided with
a trip to Pakistan, in which I sat in the home of an extremely poor family:
two rooms, no kitchen, no plumbing, no electricity, two small children with
hemophilia. The father simply wanted extra money each month to send his son to
a good school, where he would be protected, and learn English, to get a good
job. Then he could buy factor. The cost? $20 a month, he told me. The idea
became a plan.

This evening, so many of our sponsors
and colleagues came out to share our 15 years. I saw so many long term
community friends, some going back 20 years!

Cyclist Barry Haarde

Held at the Manhattan Penthouse, high
above the bustling city below, we gathered to have a lovely dinner, distribute
awards and honor our volunteers and supporters, and to welcome two very special
guests.

First, no surprise, we honored yet
again the amazing Barry Haarde, for his fifth cross-country cycling odyssey to
raise funds for Save One Life. The 2016 journey took two months this time, and
saw Barry traverse the US from west coast to east coast, and then from north to
south! I managed to hop off Kilimanjaro in time to fly to Key West, the most
southern point in the US, to welcome Barry on Route 1, mile 0. Barry takes it
all in stride, but his efforts are Herculean. He has raised awareness as well
as over $200,000 for Save One Life over his five trips, and sponsors a child
with hemophilia from India.

Laurie Kelley, Usha Parthasarathy, Martha Hopewell

Usha Parthasarathy received our
Inspiration Award. Usha is a dear friend and also volunteer and expert advisor
on hemophilia in India since Save One Life’s formation in 2001. Usha helped
Save One Life to organize and launch its sponsorship program in India. In 2009
Usha joined Save One Life as India program coordinator, assisting with growing
and managing our largest country, with 25 program partners and more than 830
current and graduated beneficiaries. She works tirelessly in a completely
volunteer role. Usha lost both her father to an intracranial bleed and her baby
within two years. She left a career as a national newscaster in India to devote
her life to helping those with hemophilia, and became development vice
president for the Hemophilia Federation (India). Her second son, Sudharsan, born
in 1981, is now a post doctoral researcher in the hematology division of
Children’s Hospital of Philadelphia.

Not present, but honored, was board
member, friend and fellow-mountain climber Eric Hill, COO of Diplomat, who
sponsors 31 children, and has organized our mountain climbs to raise awareness
and money for Save One Life. His efforts have raised over $150,000 for save One
Life and Eric recently has made the first donation to our endowment fund.

Miahi of Romania

After dinner, we were entertained by
Mihai, a lovely young man with hemophilia from Romania. He and his mother flew
all that way to attend, as our guests. Handsome, slight of build and tall, he
was introduced by my long-time friend and mentor Adriana Henderson of North
Carolina (Romanian by birth) who has devoted her life to helping the poor and
suffering in Romania with hemophilia. She explained how Mihai excelled at
playing the piano, despite the limited resources of his family, and frequent
bleeds in his hands. Mihai played several beautiful classical pieces, and
ended with Chopin’s Nocturne Op. 9 No. 2, one of my favorites.

Best of all, Mihai’s sponsor, Reid Coleman of North Carolina, attended and was able to meet his beneficiary of many years!

The final presentation of the evening
belonged to Tony Fernández,
former shortstop for the Toronto Bluejays, and for one year, the New York
Yankees. Tony has been a long time friend to the
hemophilia community in the Dominican Republic. His Toronto Bluejays teammate
and best friend, Damaso García, has a son with hemophilia. When Damaso’s wife
Haydée De García Benoit, founder and president of Fundación
Apoyo Al Hemofílico (FAHEM), the DR’s national
hemophilia organization, asked Tony to attend their first camp in 1999, Tony
gladly said yes. The children were thrilled to have a national hero spend the
day playing baseball with them. He has since attended three camps, now called
Yo sí Puedo! (Yes I Can!) and one of the best hemophilia camps in the world!

FAHEM has since become a Save One Life
program partner.

Tony has had a distinguished Major
League Baseball career, starting in September 1983. He signed on to six teams,
setting a nine-year record for shortstops. He was awarded four consecutive Gold
Glove Awards, from 1986 to 1989, and was also named to five All-Star teams. Today
Tony is an ordained minister and founder of the Tony Fernández Foundation,
which works with underprivileged and troubled children by nurturing and developing
them through counseling, education, training, and physical and spiritual
activities.

Tony shared how Damaso Jr. felt
defeated early in life; his father was a star player, but he could not even
play baseball. Tony counseled him and encouraged him to find some other way to
participate other than actually playing. The encouragement took hold. Today
Damaso is a national sportscaster for the Dominican Republic and the entire
nation tunes in to him at 5 pm daily.

Tony reminded the audience that to give is to receive, and that the world needs
our help in these troubled times. He urged everyone to pick up the envelop in
front of them, and to give. His authority, his devotion to children, made an
impact. We raised over $4,500 right after his speech, with 19 more children
pledge for sponsorship.

Tony Fernández

The next day our team met at KYNE
offices, with David Kyne, president and founder, and Save One Life board
member, for a seven hour strategy meeting. The next 15 years will see tremendous
growth of Save One Life, and many more children reached, and lives changed.

“If
we stay the course, the unthinkable might happen, yes, together we can bring
hope to the hopeless, just be faithful to the vision given to you by God and
He will find a way to bring it to pass.” Tony Fernández, major league
ballplayer, minister, founder of The Tony Fernández Foundation

Thanks to Save One Life staff Martha Hopewell and Tricia Sico for organizing the event; and to our sponsors and donors, and all attendees. Please see www.saveonelife.net for more information or to sponsor a child with a bleeding disorder in a developing country.

GALLERY

The Most Famous Hemophilia Carrier

Laurie Kelley October 3, 2016

I’m preparing for a visit to Russia next
week, a country I have not been to since 1999. So I’ve been reading two
excellent books to prepare: Peter the Great and Nicolas and Alexandra, both by
Pulitzer-prize winning author Robert K. Massie.

These books, and last week’s post on
hemophilia myths, got me thinking: Do you know who the most famous carrier of
hemophilia was? Hint: It’s why hemophilia is dubbed “The Royal Disease.”

Queen
Victoria of England, one of England’s longest reigning monarch. Her 63-year reign became known as the Victorian era, and was the longest reign until
September 9, 2015, when Queen Elizabeth II surpassed her. Her era saw British
power at its zenith across the globe; Victoria believed that the British Empire
existed to civilize people in less developed countries and to protect them from
their own rulers and the aggression of neighboring rulers. Others saw the
purely commercial aspect of this world domination of lands and trade routes.

Victoria took the throne at age 18, and later married
her first cousin, Prince Albert of Saxe-Coburg and Gotha, in 1840. Over the
next seventeen years, she and Albert had nine children: Albert
Edward, (b. 1841), Alice (b. 1843), Alfred (b. 1844), Helena (b. 1846), Louise (b. 1848), Arthur (b. 1850), Leopold (b. 1853) and Beatrice (b. 1857).
The last child, Beatrice, was delivered under the care of Dr. John Snow, who
later became the founder of modern public health by discovering the
transmission mechanism of cholera (infected water). Snow used anesthesia on
Victoria, thus giving her pain-free childbirth for the first time! While Snow
did not invent anesthesia, he created a more convenient and safer way to administer
it.

When their nine children married into royal and noble families throughout Europe (for mostly
political reasons), Victoria was called “the grandmother of Europe,”
and indeed was called “Granny” by all her grandchildren and their spouses.

Hemophilia was not known to exist in the
royal family before, but Victoria carried the gene for hemophilia B. Only
Leopold had hemophilia; two daughters, Beatrice and Alice, were carriers. They
later transmitted hemophilia to the Spanish and Russian royal families.

Leopold grew up to be a tall, intelligent,
affectionate yet stubborn prince, whose willfulness often led to injuries and
bleeds, according to author Massie. The Queen was unusually attached to her
son, and worried over him incessantly. Victoria reported in one letter that
Leopold had been at death’s door four or five times. Eventually Victoria tried
to keep him confined to the upper floors of Buckingham Palace for his own
protection, even as a man! But he managed to get away to Paris for two weeks.
Eventually at age 29, he fell in love with a German princess, Helen of Waldeck.
They had a daughter. When Helen was pregnant a second time, Leopold fell,
suffered a brain hemorrhage and died at age 31.

There was no treatment for hemophilia then, of course. Victoria was informed by telegram that her youngest son had died in Cannes. He was “the dearest of my dear
sons,” she lamented.

According to one of her
biographers, Victoria wrote an average of 2,500 words a day during her adult
life, and kept a detailed journal, which eventually encompassed 122 volumes. From this we
learned a bit about hemophilia in those days. The
Queen didn’t know what type of hemophilia her son had or if there even were
types; only much later, through genetic testing, was the family found to have
hemophilia B. While the mechanisms weren’t entirely understood, the royal
family knew that hemophilia could be passed down from generation to generation.
And it was; when it hit the Russian royal family, it would change the world.

For more information, read Robert K. Massie’s excellent books, or view “Nicolas and Alexandra,” a major motion picture and excellent portrayal of the last years of the Russian monarchy. Available on Amazon.com. Robert K. Massie also has an adult son, Robert K. Massie, Jr., who was later cured of his hemophilia through a liver transplant. His life is exquisitely portrayed in the book Journey.

Hemophilia Myths and Facts

Laurie Kelley September 26, 2016

Myths are stories or beliefs created to explain phenomena when scientific knowledge is lacking. Sometimes they persist even when scientific explanations are available, because people can get emotionally impacted by myths. When it comes to blood, people have strong emotional beliefs and feelings, and this may prolong myths. So read this nifty list of myths which includes the facts that dispel the myth. You can download a pdf of this with graphics here. Enjoy! Hemophilia is a medical condition that impairs the body’s ability to control bleeding. There are about 20,000 people with hemophilia in the United States and with the condition being so rare, many people may not know much about it. Below we dispel 10 common myths to help you better understand hemophilia.
MYTH	FACT
If a person with hemophilia gets a minor cut, they’ll bleed to death.	People with hemophilia don’t bleed faster, but they do bleed longer because they’re missing a protein in their blood that assists in forming stable clots. Minor cuts are not a cause for concern and will usually heal on their own.1
Only males have hemophilia.	It’s true that hemophilia does primarily affect males because it’s an X chromosome-linked medical condition.1,2 However, females who are carriers can also experience bleeding symptoms. Though extremely rare, a daughter who is born to a father with hemophilia and a mother who is a carrier can inherit the severe form of the condition.3
People with hemophilia always have a family history of the condition.	Nearly one-third of hemophilia cases are not genetically based and have no family history of the condition.1
All people who have hemophilia are diagnosed at birth.	Due to a lack of bleeding at birth or because the family doesn’t have a history of hemophilia, some people who have hemophilia may not be diagnosed until months after birth, as toddlers, or even later, depending on the severity of their medical condition.4,5
Children with hemophilia will grow out of it.	Hemophilia is a lifelong condition, a bleeding disorder caused by the absence of an essential blood clotting protein.1 While there is no available cure for hemophilia, research continues to progress and shows promise. Scientists are currently researching how gene therapy can help the body produce its own clotting factor.2
Hemophilia is the same for all patients.	People can have hemophilia A, which is defined by low levels of clotting factor VIII (8), or hemophilia B, defined by low levels of clotting factor IX (9).1,3 The severity of hemophilia is categorized as mild, moderate, or severe.1 Additionally, about 15% to 20% of people with hemophilia will develop an antibody—also called an inhibitor—which is one of the most serious complications of the condition.6
People with hemophilia shouldn’t exercise or play sports.	Exercise is important for people with hemophilia because it strengthens muscles, which helps protect joints, and reduces the risk of being overweight, which places added stress on joints. They should work with their health care professional to create a fitness plan that’s right for them.7
Hemophilia is a “royal disease.”	While it’s true that in the 1800s hemophilia did affect the royal family of Queen Victoria of England, hemophilia affects people regardless of race, ethnicity or economic status.2,4
Hemophilia causes AIDS.	Hemophilia doesn’t cause HIV/AIDS. Unfortunately, from 1978–1985, many people with hemophilia did contract HIV when they received treatments made from tainted blood donations. The blood supply is now much safer due to improved donor screening and advanced purification methods, and also, many newer treatments aren’t made from donated human blood. There hasn’t been a documented case of HIV from the use of hemophilia treatments since 1987.2
People with hemophilia can’t live normal lives.	With proper treatment, most people with hemophilia lead long, full, and productive lives.4

References

1. National Hemophilia Foundation.
Hemophilia A. https://www.hemophilia.org/Bleeding-Disorders/Types-of-Bleeding-Disorders/Hemophilia-A.
Accessed November 3, 2015.

2. National Hemophilia Foundation.
History of Bleeding Disorders.
https://www.hemophilia.org/Bleeding-Disorders/History-of-Bleeding-Disorders.
Accessed November 3, 2015.

3. Midwest Hemophilia Association.
Myths and Facts About Hemophilia.

Myths and Facts About Hemophilia

Accessed November 3, 2015.

4. Indiana Hemophilia &
Thrombosis Center, Inc. Hemophilia Awareness Month – Fast Facts for Patients.
http://www.ihtc.org/wp-content/uploads/2012/02/Hemophilia%20Awareness%20-%20Fast%20Facts%20for%20Patients.pdf.
Accessed November 3, 2015.

5. Centers for Disease Control and
Prevention. Hemophilia Diagnosis.
http://www.cdc.gov/ncbddd/hemophilia/diagnosis.html. Accessed June 7, 2016.

6. Centers for Disease Control and
Prevention. Hemophilia Inhibitors.
http://www.cdc.gov/ncbddd/hemophilia/inhibitors.html. Accessed June 13, 2016.

7. National Hemophilia Foundation.
Playing It Safe: Bleeding Disorders, Sports, and Exercise.
https://www.hemophilia.org/sites/default/files/document/files/PlayingItSafe.pdf.
Accessed November 3, 2015.

Novo Nordisk is a registered trademark of Novo
Nordisk A/S.

Pfizer’s Give Forward Program offers you a way to give back to your community

Laurie Kelley September 18, 2016

The hemophilia community has a
big heart and is always there to help others. I have my own international
nonprofit to help those with hemophilia in developing countries. And there are
programs right here in the United States that can help hemophilia related charities.

Below is one such program. Please read and click through to learn more!

The free BeneFix Give
Forward Program provides you with the opportunity to earn points and then turn
your points into charitable donations for organizations that mean the most to
you. How are these points earned? By engaging with Pfizer Hemophilia’s content,
programs, and services on the Give Forward website.

The
BeneFix Give Forward Program is
mobile friendly, so you can take it on the go without downloading an app.

Sign
up today at BeneFixGiveForward.com to see how you
can start earning points!

What Is
BeneFIX?

BeneFIX, Coagulation Factor IX
(Recombinant), is an injectable medicine that is used to help control and
prevent bleeding in people with hemophilia B. Hemophilia B is also called
congenital factor IX deficiency or Christmas disease.

BeneFIX is NOT used to treat
hemophilia A.

Important
Safety Information

· BeneFIX is contraindicated in patients who have manifested
life-threatening, immediate hypersensitivity reactions, including anaphylaxis,
to the product or its components, including hamster protein.

· Call your health care provider right
away if your bleeding is not controlled after using BeneFIX.

· Allergic reactions may occur with
BeneFIX. Call your health care provider or
get emergency treatment right away if you have any of the following symptoms:
wheezing, difficulty breathing, chest tightness, your lips and gums turning
blue, fast heartbeat, facial swelling, faintness, rash or hives.

· Your body can make antibodies, called
“inhibitors,” which may stop BeneFIX
from working properly.

· If you have risk factors for
developing blood clots, such as a venous catheter through which BeneFIX is given by continuous infusion,
BeneFIX may increase the risk of abnormal
blood clots. The safety and efficacy of BeneFIX administration by continuous infusion have not been
established.

· Some common side effects of BeneFIX are nausea, injection site reaction,
injection site pain, headache, dizziness and rash.

Click here for full
Prescribing Information.

You are encouraged to report negative side effects of
prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

PP-BEN-USA-0188-01

As I Get Older

Laurie Kelley September 11, 2016

This is a lovely essay submitted by one of our PEN readers, a reflection on what an older gentleman in our community has learned… and wishes to share with younger people.

By Richard Hiteshew

I am
75 years old and have severe hemophilia B. I infuse twice weekly, 5,000 IU. When
I was growing up I thought that I would not be able to walk in my later years
due to the hundreds of leg injuries I sustained as a child. I still walk but
have had other difficulties. Frankly, I was not prepared for advanced age. In
the interest of helping others avoid some of the pit falls, I would like to
give some advice.

First
and foremost, you must own yourself. You have a disorder. I remember my mother
telling me when I was six or seven years old, “Richard, you were dealt a
bad hand, make the most of it.” Hemophilia has been referred to as the “royal disease.” It was in the German, Spanish, English and Russian royal families in the 1800-1900s. I believe it is called the royal disease because
it is a royal pain! Hemophilia is a chronic disorder that can, in 15 minutes of
sustaining an injury, become critical. You must personally own it and learn how
to work with it.

Proverbs 16:18 says pride goes before a
fall. Get handicapped tags for your car. Buy a four-prong cane. Get rid of your
pride. You may be in a wheelchair, crutches, braces, or have a terrible limp.
So what? Hold your head high and remember that there are people who have it a
lot worse than you. Purchase a fold up chair that has side arms. The arms will
help you get out of the chair. Keep the foldable chair in your car. Purchase a
lift chair to help you get up for home use. They are very expensive, but you
can buy them for a deep discount on Craigslist.

I have
all of my original joints except for my right shoulder. Several years ago I had
to undergo total reverse shoulder replacement. The reason for the replacement
was a loss of cartilage in my shoulders. That loss was caused primarily by
lifting myself from a sitting position using my arms instead of my legs. I also
had to lift myself from my many sports cars. The sports cars are fun but sit
low to the ground, and we unknowingly injure ourselves getting in and out. So
lose the sports cars and get a minivan. It is my experience that the best
minivans for impaired people are the midsized like the Ford Escape, Cadillac
SRX, and BMW X3. A good test is that you want the seat to be butt level. You
also want the vehicle to have wide doors to allow easy entry and exit.

Prevent
falls. When walking, even for a short distance, never try to carry something in
both hands. You need a free hand for balance or to steady yourself. Put handrails
on all steps, even if it is only two or three. Additionally, put grab bars
anywhere you may need them. I have nine grab bars in my bathroom. I also have
them at every step down in my home, both inside and outdoors. Make your home
handicapped accessible.

When
walking, never, ever step out of someone’s way. Side stepping is dangerous.
Stand still and let the other person walk around you. Never walk backwards for
any reason. You cannot see what is behind you. Learn to fall down. It’s called
tuck and roll. If you feel yourself falling, tuck your arms close to your body
with one hand over the other and turn your body so you will land on your
shoulder. Your shoulder will take a hit better than your hip. Don’t try to
catch yourself. That is how elderly people break their arms or worse yet, their
wrists. If you are walking on grassy surfaces, either use your cane or hold
onto someone’s arm. Divots in grass can drop you in a flash.

Finally,
be your own advocate. Don’t listen to other people who say “It’s going to be ok.”
If it’s not ok, there is only one person in the world that will suffer the
consequences: you. If you are not comfortable with anything, assert yourself
and say no. If you are mistaken you can always have a do over. Learn as much as
you can about your disorder so that you know more than anyone… maybe even your
doctors!