February 2015

Bears, Beer and Hemophilia

What do they have in common? Hemophilia is rare, occurring in an estimated 1 in 5,000 male births. As rare as it is, hemophilia manifests in some unusual places, like literature! Here’s a book review from our colleague Richard Atwood, of North Carolina, called Fantastical: Tales of Bears, Beer and Hemophilia.
Marija Bulatovic, an only child, was born in the 1970s in Kraljevo, Yugoslavia (now Serbia). She and her parents immigrated to the United States before their country disintegrated and erupted into warfare
that spread throughout the Balkans. In America, Marija became an experienced
business professional with Fortune 500 companies. Living in Seattle with her
husband, Marija was inspired by the birth of her son. She became introspective
and recorded the childhood stories from her homeland.
When eight years old, Marija enjoyed eating virsle, or
Serbian hotdogs. Her mother disapproved and said, “Never eat hotdogs again.” She explained her concern by stating, “Hotdogs cause hemophilia.” Marija did not know the
condition of hemophilia. Her mother added that “hemophilia was a very serious blood disease and that
hotdogs, made with subpar meat and chemicals, could lead to it.” (p. 78). Marija, questioning
her mother’s statement but still not doubting her mother’s

Marija Bulatovic 

wisdom, carried this belief that hotdogs cause hemophilia for 30 years. This
resulted in an embarrassing moment with her boyfriend while on vacation in
Puerto Rico when she realized the fallacy of those beliefs.

Richard writes that his self-published memoir of interesting stories
includes 19 photographs, one map, and an Appendix of Serbian Proverbs. The
reference to hemophilia is mildly comical. The story reveals more about a
mother’s concern over healthy eating and a daughter’s blind faith that her mother’s
wisdom would never mislead her than about any insight into the medical
condition. Of course, hotdogs may be unhealthy, but they do not cause bleeding disorders.
Nor, might I add, he bag of Oreos I consumed while pregnant!
Marija Bulatovic, 2015, Fantastical: Tales of Bears, Beer and Hemophilia. SOL, LLC. 101 pages.

Meet You in St. Louie?

Many of you might know we have more than one national hemophilia organization. Most people around the world know National Hemophilia Foundation (NHF), which has been around for 60+ years.  But we also have Hemophilia Federation of America (HFA), founded during a crisis time, when at the grassroots level part of our community felt their needs were not being met. From a small group of interested consumers, it has grown to become a national grassroots organization with advocacy at its heart. I like its messaging and style: simple, direct, and proactive.
Since its founding, it has held annual meetings, well timed to occur opposite in the calendar to NHF’s meetings. The next one is in St. Louis March 26-28.
The meetings are much smaller than that of NHF, and so actually gives you a chance to mingle and meet so many people in a less formal atmosphere. I haven’t been to many, as I am usually traveling to Africa or Asia at that time (while the weather is cooler there!) but the symposia I have attended have always been causal, informative, and fun.
Try to go if you can! And check out HFA’s many programs and offerings. It has an excellent website!
For info: www.hemophiliafed.org

Great Book I Just Read

To Live is to Die: The Life and Death of Metallica’s Cliff Burton [Kindle]

Joel McIver
The incredible and mesmerizing story of a bass guitar legend who helped establish one of the first “thrash” heavy metal bands, Metallica. Cliff Burton was only 24 when he died in a tour bus crash in Sweden, when Metallica was just becoming famous. Burton was dedicated to bass guitar from an early age, mastered it like no other and experimented with it on stage in a way no other had done (listen to his lead in on “Anesthesia”). He was in many ways the soul of the band. With his jean jacket and bell-bottom denims, he didn’t fit the mold of thrash metal,  staying true to who he was at heart: a quiet, intense and musically talented young man. He brought Bach into heavy metal, helping to give Metallica its unique sound. His death left a permanent scar on the band. This is a well written, in-depth account of Burton, almost a memorial to a man who would have risen to great musical heights, but whose work is preserved forever in albums like “Kill ’em All” and the incomparable “Master of Puppets.” Four/five stars.

LA Kelley Communications Origins: Part 2 PEN is born!

Laurie Kelley and Mary Ann Barth 1994

I thought my life’s work was complete at age 33 when my book Raising a
was published. It took eight solid months of grinding work, not
helped by the fact that there was no Internet, or decent word processing software
in 1990. I actually had one of the first Apple computers, with a whopping 128 MB
of memory!** And now I had a full-time job as an economist, a three year old
with hemophilia and a darling newborn daughter!

Laurie Kelley and Mary Ann Barth reunite at NHF in 2014

But life had other plans. A mom from North Carolina, Sybil, wrote to me (and I mean wrote, like a paper letter; no emails for us then!) a wish: wouldn’t it be nice if we could somehow keep the exchange of parental stories going? Like in the book, which included the quotes of 120 different families with hemophilia. It was the first time in history that families with hemophilia could read all about their disorder and share in the experiences of other families.

Sybil thought a newsletter could keep the stories going. Great idea. But how?

At the same time, a woman named Mary Ann Barth, a cofounder of Quantum Health Resources, the homecare
company that shipped my son’s factor, got a copy of my book. She like it so
much she called me and asked if Quantum could support some initiative of mine. Perhaps
another book? Of course, Quantum wanted to put its name and logo on such a book,
the way Armour Pharmaceutical did. And why not? These companies paid for the research, writing and publication. We then gave away the book. No royalties; no one profited. All the companies asked for
was to have their logos on the covers as an acknowledgement.
I’m a businessperson, and I got it. It made sense. Like Nikon sponsoring the Olympics. Happens all the
I suggested a newsletter to Mary Ann (not yet knowing how I would accomplish this) and she happily gave me
a few hundred dollars to get sponsored. I only had 120 families on my mailing list, the ones who contributed to the book. I called my new venture The Parent Exchange Newsletter, because it would primarily be an exchange of parent and patient information, much like the groups on Facebook do now. My resources were limited. I cut and pasted paper submissions, and photocopied each newsletter and stapled them. I mailed them and “PEN” was born! Primitive but effective!
After a year of this, Mary Ann wisely suggested to let their promotional group help with the design. They designed a simple but professional look to PEN. I submitted my articles, and they did the layout and printing. We branched out to start writing about topics, not just publishing family letters and photos.
Working by day as an economist, full-time mother from 5 pm to 8 pm, then working on my newsletter each quarter. We mastered home-infusion when my son was two so we were no longer tethered to the HTC.
My biggest break came when my colleague Rob Partridge, then Monoclate-P product manager at Armour, who had approved my book and got me started, asked me to publish another book. The first book was so successful; we had to do another printing soon! Families were
calling Raising a Child With Hemophilia their hemophilia “Bible” and my mailing list grew with each family that wrote to me. More shared their stories, watching to be heard.
Another book! But about what?
As my own children were growing, I (who had a degree in child psychology and also had published research on own children understand health and illness at different ages) realized that as I read each night to my children books like The Hungry Caterpillar, Horton Hears a Who
or The Magic School Bus, there were no books for children on hemophilia. Understanding how children learn to read, and process their world at different age groups, a branch of psychology known as developmental psychology, I felt equipped to try to write a children’s book on hemophilia, to help children understand. Indeed, ideas just came to me as I lived with trying to teach my own son about his disorder in a way he can understand.
I proposed to Rob some children’s books ideas, and he loved it! He approved. I also could sketch and
used to paint, so I was author and illustrator. I thought of a book or poems explaining hemophilia to preschoolers in a fun manner; a history book about Alexis, son of the last Russian tsar, a story which might have changed history forever. Remember I was reading Peter the Great while in labor with my son. I loved Russian history and wanted everyone to know why hemophilia is called the Royal Disease, and then to know the story of how hemophilia changed history, and created modern history. None other than Suzamme Massie, who helped write the Pulitzer Prize winning Nicholas and Alexandria, and whose son has hemophilia, helped me!
I realized that by lining up some contracts for my newsletter (funding from Quantum) and my children’s books (funding from Armour Pharmaceuticals) a dream was born: I could stay home with my children. I wanted nothing more than to be a stay-home mom. I had worked so hard, day and night, doing what we called “The Mommy Track,” trying to be a dressed up businesswoman by day, mom by late afternoon and early evening, and now entrepreneur each evening, I craved to be home to play with my kids in the sunshine, take them to the park, to museums, the Boston Aquarium, make them lunches and relax a bit.
With a year’s worth of book contracts, I realized I could quit my job, thus saving a fortune in daycare, professional clothing and dry cleaning, and gas. And make a little bit of money on the side. I had paid off my debts and was ready to enter full time motherhood, with some side projects.
In July 1991, I quit my job at the economic forecasting company, waving good-bye to my colleagues of six years, grateful for all the business, contracts and number-crunching experience I had. These would prove valuable to me as my own business grew. PEN continued
to grow and became focused on teaching, rather than just sharing. And we had a new children’s book called Just a Boy, modeled after Dr. Seuss books. And more would come.
Best of all, I was able to spend a whole summer with my four-year-old son and one-year-old daughter. We lived in an ancient home in a crowded neighborhood—just ten steps and you had traversed the whole house! But we didn’t care. We were home, healthy and making a difference.
Next: Going Global!
** My computer? Macintosh II, the first Apple with color graphics. It features 16 MHz 68020 processor, and 1 MB of RAM. A basic system with one 800 kb 3.5-inch floppy drive, sold for about $1,3900. Ouch. But I am still a loyal Apple customer.

LA Kelley Communications: Origins

It sounds like a Marvel movie title, but it’s us! Our origins.
This year, 2015, marks the 25th anniversary of LA Kelley Communications. How did we get started; what made us do what we do? How far have we come?
And more amazing, how did we do it without internet or cell phones?
My son with hemophilia was born in 1987, and there was no family history of hemophilia. I have six brothers and five maternal uncles; diabetes runs rampant but not something as rare as hemophilia. A few weird coincidences surrounded his birth:
 • It wasn’t planned! We were newlyweds, deep in grad school debt and wedding
debt, and wanted to wait a few years before having a baby. We took precautions. How we got pregnant will always be something of a mystery!
• My son’s father, a scientist, worked at Biogen, on recombinant factor VIII development. Really.
• The day I went into labor, on Labor Day appropriately, I knew it was going to be a long haul so I grabbed a big and
favorite book: Peter the Great, by Robert K. Massie. My mom had given me this book at Christmas, nine months
before, when I didn’t even know I was pregnant, with the comment, “The author’s son has hemophilia and that’s why he writes about Russian history.” The delivery room nurses poked fun at me in-between contractions for reading this
epic story: “What do you have, a test in the morning?” they quipped.
Imagine what went through my mind when my son was born and was circumcised 12 hours later, and the doctor came into my hospital room scratching his head, saying they had to stitch the wound. “In 30 years I’ve never seen a child bleed like that before.” Hemophilia, I thought, just like the author’s son.
Laurie Kelley: big hair of the 80s

I won’t go into all that happened, but suffice to say we felt utterly alone, powerless, afraid. At least I did. And I really dislike feeling little control over my life. I had a hard-earned graduate degree, paid
for my own schooling and wedding, with only pennies left, and just landed finally a good job at an economic forecasting firm. Everything was looking up to get out of debt and improve our lives. Now this!

We met with the HTC staff in Boston, who were wonderful. Yet none of them even had children. They couldn’t totally prepare
me for what was to come. They did know a lot about infusions, and that scared me. Indeed, when our lovely nurse called me on a Friday afternoon to tell me my son had hemophilia, over the phone (not recommended!), I was so overcome with
fear and sadness, I thought, I know how to handle this. I promptly hung up on her.
Well, we eventually had our first infusion, first bleed, and knew to take him to the HTC for infusions. One day, while dressed in my high heels and red silk dress (this was the 80s, you know) bringing my son to daycare, I slipped on mulch in the driveway and the baby flew out of my arms. He hit his head on the driveway and started crying. I started crying. The babysitter started crying. Off to the HTC.
Hours later, when it was determined he was ok, I felt drained and scared. When I shared this story at our parents’ support group
meeting, our nurse thought it would be good if I wrote my feelings down, as a way to handle them. I did, and that started turning into a book, as I wrote down everything I learned. When my son was 6 months and learning how to stand, he bit the crib rail and started a frenulum bleed. It stopped! The HTC said to just monitor overnight.
In the morning, when I went to get him, our son was standing up in the crib, holding on to the crib rail, bottle in hand. He was
covered in blood. Now, we knew it was from the little frenulum tear, but it looked so ghastly! All I could see were two little white eyes. Blood seemed everywhere. We cleaned him up as best we could and wrapped him in a sheet to sneak him to the car. (We lived in a neighborhood where houses were about two feet apart). At the hospital, it stopped bleeding again! No factor was given
and we were sent home. But later, a mom of another child with hemophilia asked if I had give him Amicar. “What’s that?” I asked. She shared that it neutralized the saliva from breaking down a clot. Had we given it to him when we first saw the bleed, we might have saved the clot (remember it did stop at first) and prevented the hospital trip. Not even the doctors had told me that.
It was like a light bulb went off. Parents know so much. Experienced parents. But no two families went through the same thing.
There were similarities and differences. If only I could capture all these! Other parents must be going through what we’ve gone through as well. We need a book, I thought.
A book was the only option. There was no internet, no email, no Facebook, no way to read anything about hemophilia. I had contacted
the National Hemophilia Foundation and received a pamphlet. I was hungry for information and wanted to sink my teeth into a book, like a Dr. Spock book on child raising, only for hemophilia.
I had a background in child development. I knew I
could write. And I was desperate. A mission was born. My life’s mission became
to write the book I needed; that other parents needed.
I took out an ad in a homecare magazine that I was
writing a book on hemophilia and to share your stories. I had 50 phone calls
the first day. The first was from Linda in Virginia, who had a 17-year-old son
with factor IX deficiency. We spoke for two hours. The second call was from a
Linda in Washington, who also had a 17 year old with factor IX deficiency! Neither
mom had ever spoken to another mother of a child with hemophilia. This is how
separated we were. I put them in touch with each other.
This was going to be interesting.
While at work one day, I glanced through another magazine, now defunct, called HemaLog. It was superficial and sugarcoated. I bristled at how it talked “down” to me. Yes, I was taking it all too
personally, but my Irish temper got the better of me. I tore out the business reply card, told them what I really thought, and tossed it in the mail. I felt better.
I felt much worse three days later when Rob Partridge
called me. He was the product manager for Monoclate-P, a factor VIII product
manufactured by Armour Pharmaceutical. I almost sank under my desk in embarrassment,
but he assured me he wanted to know what parents thought and what Armour could
do to help.
I told him we needed a book, a parenting book. Desperately.
Great! he said. How, when, how much? We talked about
what this would look like and before I knew it, we had a contract. I was going
to be an author. He took a huge risk, but I have to say it was a match made in
heaven. Rob was new in his position and looking to make a difference. And so
was I.
The book was hammered out in 8 months; I had a
deadline. Another baby on the way. For 8 months I worked all day at my job as
an economist, picked my son up from day care, came home, bathed him, played with
him, made him dinner, put him to bed, and worked till midnight on the book. My
computer was a 25-pound Compaq, that I wheeled out of work each night using a
handcart. The screen was black with little green letters; primitive by today’s
standards. There was no internet. No cutting and pasting. I read every single
submission sent to me. In total, 125 people. A wealth of knowledge. I learned
so much and was excited to bring this to the community.
Finally October 27, 1990 the book was done. Just in time. At 1 am October 28, my birthday, my daughter was born. My book and
daughter, born at the same time.
With the publication of my book, which I insisted would be given free of charge to families, I thought my life’s work was complete. I published a book! Now I could go back to being an economist, right?
Life had other plans!
To be continued…
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