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Letter to The NonMask Wearers

Laurie Kelley November 15, 2020

This letter was submitted to us by a member of the hemophilia community, who wishes to remain anonymous. We promised to print it, and we offer our deepest condolences on her loss.

Dear non-mask wearers,

You know that the government of New Mexico mandated that we need to wear masks for a reason. The reason is to protect not only you but your family as well.

To the rebel who decided that it was not important to wear a mask and that it was okay to put other families at risk, you tore apart MY family. My dad, who had moderate to severe hemophilia A, contracted COVID-19, and despite the many trials and tribulations that he went through he was not able to overcome it.

His parents were told that he was not going to live past being a teenager. He defied all odds and lived to be 61. He had a lot of problems in his life, but overcame those as well. He had blood transfusions which gave him HIV and hepatitis C. He was able to beat both of those. He was able to get HIV and hepatitis C to an undetectable level. He also was able to raise his only child, me, pretty much by himself. He was able to meet his grandchildren and play a big part in their lives.

He became sick with bronchitis for some time and then had an allergic reaction to one of the antibiotics. He went to the hospital for extreme pain in his leg due to the antibiotic. They tested him for COVID-19, and he tested positive. He was life-flighted to a different hospital and put in the ICU. While in the hospital, they did a CT scan and found that he had two bleeds, one in his back and one in his leg. Later, he was also diagnosed with bleeding in the belly by venous bleeds which were really hard to contain. He continued to bleed so much that medics gave him six units of blood. He got to the point where he was combative because of him being in so much pain that he refuses to let anyone touch him. I remember how I use to have to tiptoe around the house because he would have a bleed and the vibrations would just hurt him so bad. He was placed on a ventilator and lapsed into a coma. His body just eventually gave out on him.

Due to COVID-19, I was unable to see him in the hospital, but I was able to talk to him on the phone. I have to say this was maybe the hardest part in my whole life because I was unable to see him in person. I never realized how important that last moment was to be able to see them and be able to tell him how important and loved he really was. Growing up, we did not say that we loved each other very much. I just wish that one last time I would be able to hold his hand, tell him that I love him, and to be able to kiss him on his cheek.

This is what you risk when you do not wear a mask. You not only don’t protect yourself, but you risk infecting other families as well. My dad was too young to die but because someone who was so inconsiderate to not wear a mask got my dad sick, and he died.

Sincerely,

A grieving daughter

Leadership, Remembered

Laurie Kelley November 8, 2020

This has been a week of leadership reflection regardless of who you voted for. I read from one news source that Biden made this a campaign about character; and many friends on Facebook stand by Trump for his policies. These traits, and so many others, are what make up leadership. While it has been a rocky week, and an exhausting, challenging year, it is all about leadership.

I reflected on leadership this week coincidentally, while remembering one of the greatest and most unique leaders we ever had in the bleeding disorder community—Renée Paper. She passed away November 7, 2007, at age 49. If you ever got to meet her and hear her speak, you probably never forgot it. I always say she was a great lady, in size, intellect and passion. The most intelligent woman I ever met. She had a photographic memory, razor sharp tongue, ribald sense of humor, love of animals and fiery passion to help people. She was an emergency room nurse who had von Willebrand disease (VWD), and truly became our foremost spokesperson and advocate for women with VWD. After hearing her speak (like a cannon going off) at various events five times, I was so excited myself (why wasn’t anyone doing anything to help those with VWD?), that I talked her into co-authoring a book with me, which became the world’s first book on VWD, published in 2004.

I could not imagine that I’d lose this amazing person, who lectured like an old time preacher, who could draw audiences from young women to seasoned hematologists, who pounded the podium in her quest to get the NHF, the country, doctors, patients and even the government to take women with bleeding disorders seriously. Who can forget her favorite line? “Know why doctors don’t take us seriously when we tell them we bleed too much and too often? Because men don’t have uteri!” And she would smile to see the audience either squirm (the men) or roar with laughter and approval (the women).

She and I traveled together, presented together, wrote together. She loved coming to visit my zany household (“You let your kids roller skate in the house?” she asked incredulously) And then proceeded to reprimand me for not giving my elderly dog pain killers.

I loved Renée and sadly witnessed her demise; years of health issues took their toll. She died far too young. She had character and was a character. She also possessed those vital traits of great leaders: compassion, boundless energy, drive, passion, and vision. She didn’t live long enough to see her vision come true. We do have much better care for those with VWD now. But I often wonder hw much further we could have gone, had this amazing leader stayed with us a bit longer.

A new edition of A Guide to Living with von Willebrand Disease will be available in 2021.

Vampirism: The Lust for Blood

Laurie Kelley November 1, 2020

Every Halloween I indulge my love for literature by reading the classics: War of the Worlds, Dracula or Frankenstein. Great novels with iconic characters and intelligent stories. While War of the Worlds, by H.G. Wells, is not exactly a Halloween story, it rose to new fame when Orson Welles broadcasted live from New York’s Mercury Theatre in 1938, in a now infamous radio play, based on the book, which terrified listeners and convinced them that an actual alien invasion of Earth was happening!

Richard Atwood, our favorite archivist from North Carolina, loves literature too, and keeps finding these amazing and obscure books with references to hemophilia. And here’s another one he uncovered about vampires and hemophilia—well, not exactly vampires…

A Love Like Blood by Marcus Sedgwick. 2014.

In 1944, Dr. Charles Jackson, a 25-year-old house officer at Barts, is called up as captain in the Royal Army Medical Corps, Field Hygiene Section. When Paris is liberated, he visits an antiquities museum at Saint-Germaine-en-Laye. Weirdly, he stumbles upon a man in a bunker drinking blood from a woman. Stunned by either fear or curiosity, Charles turns and leaves quickly.

After the war, he returns to Cambridge as a 31-year-old consultant in hematology. In 1951, while attending an international conference in Paris to read a paper on leukemia, Charles spots the man in the bunker! He is dining with a beautiful woman in her early 20s. With a bit of sleuthing, he discovers the man is Anton Verovkin, a rich and titled Estonian in exile, and the woman is Marian Fisher, an American PhD student at the Sorbonne. Marian is researching her dissertation: how blood is used in Dante’s The Divine Comedy.

Charles eventually starts a relationship with Marian and falls in love. In Paris that June, Charles finds Marian to be paler and ill, and he warns her of Verovkin as being dangerous. By August, Charles is told that Marian has returned to America for a heart operation. Charles chooses to focus on his hemophilia research in Cambridge. His small research unit investigates improved plasma products to help patients with hemophilia. Charles eventually marries Sarah, who then tragically dies. This guy has bad luck!

In 1961, Charles receives a letter from Mrs. Margery Fisher in New York. She reveals that Marian died in 1951, and was buried in Paris, hinting that Marian had loved Charles. Following scant clues, Charles travels to Paris to learn of Marian’s brutal murder, and then to Avignon to discover Verovkin conducting a blood-drinking religious ceremony. Verovkin’s followers abduct and beat up Charles before the French police send him home. Charles inquires into clinical vampirism, or blood drinking. An invitation to visit Professor Enzio Mazzarino in Rome to discuss his hemophilia research turns out to be a ruse, but Charles encounters an underage prostitute. When Charles returns to London to be with his dying father, the police raid his house to find planted photographs of Charles with the prostitute. Fired from his job and fleeing the police, Charles takes his inheritance money and hides in Scotland.

Studying clinical vampirism, specifically the psychologically disturbed and their relationship to blood, Charles becomes more paranoid. He accidentally kills a private detective, who he hired to find Verovkin, when the detective instead stalks Charles. Hiding in London, Charles learns more of the perversions and taboos of blood. When, in 1964, newspapers report that Giovanna Scozzo, a young Italian female with hemophilia, will be treated at the Swiss Haemophilia Clinic in Lausanne due to the generosity of a rich Swiss philanthropist, Charles, without a passport, makes his way to Switzerland, killing a fisherman on the way. The abducted Giovanna is the bait for Charles, who is also abducted to Verovkin’s chateau in Yugoslavia. Imprisoned there, Charles is forced to drink blood to survive. By cutting off his thumb, Charles escapes his wrist shackle and burns down the chateau. Still wanting to avenge the murder of Marian, Charles searches three years for the scarred Verovkin, finally finding him in Italy, in 1968. Charles kills Verovkin, by slashing his neck with a knife, eerily realizing his personal desire for blood.

Richard comments: “ This novel, labeled as crime fiction, begins with an interesting love story and morphs into a disturbing thriller. The budding romance of a hematologist specializing in hemophilia and a beautiful woman never reaches fruition, yet the protagonist seeks revenge for the murder of his unfulfilled love, using his hefty inheritance to fund his obsession. The novel lists numerous minutiae about blood. Hemophilia is an integral part of the plot involving blood, adding vital substance and the appropriate name for the “love of blood.” Oxford researchers are attributed, in 1951, with the use of snake venom as a treatment of hemophilia, and then, by 1961, for the identification of additional clotting factors.

Marcus Sedgwick, 2014, A Love Like Blood. New York, NY: Pegasus Crime. 310 pages.

From starting school to starting young adult life, BleedingDisorders.com can help at every mile of the journey

admin October 25, 2020

Our publications address the many challenges you face as you reach new milestones in life with hemophilia. For this week’s HemaBlog, we suggest you check out this website to learn more about handling life’s many phases and changes!

Laurie

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.

Every life has its twists and turns, and that’s even more true for young people with bleeding disorders and their caretakers. BleedingDisorders.com is right there with you through every mile of the journey, with info and resources designed to help you and your family navigate change—whether that means your child’s first day of school or their last day living at home.

As school is getting underway, get the team together
Starting school is a big step—for you and your child! To make it as safe as possible, it’s a good idea to go over some important topics with key members of your school team, including your child’s teacher, the school nurse, the guidance counselor, the gym teacher, and someone from administration.¹ You play an important role in educating them about your child’s bleeding disorder and what they should expect with your child under their supervision. And of course, this meeting can be virtual or in-person, depending on your school’s situation.

Wondering what other topics you should cover with your ace team of educators? Bleedingdisorders.com has put together a helpful list.

Growing up and taking control
Young adulthood is another important transitional period for people living with a bleeding disorder. For some, it might be the first time in their life they are responsible for managing their treatment and their symptoms on their own. And whether they are moving into a college dorm or just moving out, you and your child should make sure you’re both prepared for the transition.

Here are a couple key tips for your family that could help make the move go smoother:

Prep for an Emergency
With hemophilia, a bleeding emergency can come at any time. Preparing an Emergency Care Letter and an emergency bag with everything they’ll need can save time and stress.²

Ace Your Storage Quiz
Make sure they know exactly how to store and handle their treatment. Products that have been improperly stored or have expired may not be as effective in preventing or treating bleeding episodes.³

See the full list of helpful tips for young adults at BleedingDisorders.com.

Stay connected
No matter what life stage you or your child is at, it’s important to have a good relationship with your local Hemophilia Treatment Center, where you can get expert advice about managing a bleeding disorder. Your healthcare provider team can also help with any big life changes your family may face. And of course, connect with the Bleeding Disorders community on Facebook, Instagram, YouTube, and Twitter, and sign up to get the latest news and updates.

References:

Phyllis McIntosh; HemAware. Back to school. 2006. Accessed September 14, 2020. https://www.hemophiliafed.org/uploads/Back-to-School_Hemaware.pdf
Emergency preparedness. Steps for Living website. Accessed September 14, 2020. https://stepsforliving.hemophilia.org/step-up/treatment/emergency-preparedness
Frase M. Safely storing factor at home. HemAware website. June 21, 2010. Accessed September 14, 2020. https://hemaware.org/bleeding-disorders-z/safely-storing-factor-home

Copyright © 2020 Takeda Pharmaceutical Company Limited. Lexington, MA 02421. 1-800-828-2088. All rights reserved. TAKEDA and the TAKEDA logo are trademarks or registered trademarks of Takeda Pharmaceutical Company Limited.

US-NON-2287v1.0 09/20

Snakes and Hemophilia

Laurie Kelley October 18, 2020

Just in time for Halloween, our amazing archivist, Richard Atwood of North Carolina, has found another reference to hemophilia in an unlikely place—a novel about snakes. The Snake, by John Godey, published in 1978, is a novel about… a snake.

It’s called a black mamba, though olive-slate in color, extending 11 feet, 2 inches. The black mamba is the largest and deadliest poisonous snake in Africa. The snake arrives in New York City in a plywood box with a burlap lining and air holes.

A Greek bought the snake in Elizabethville, then lost it in a poker game in Maputo. Matt Olssen, a seaman returning from Africa to the States, wins the snake and wants to sell it to a zoo. After docking in Brooklyn, Olssen takes his snake-in-a-box and begins drinking. In Central Park late that September night during a stifling heat wave, a thug named Ramon Torres mugs, then shoots Olssen dead. The box breaks open and the snake bites Torres twice in his thigh. Torres dies that night at East Side Hospital.

The next evening Roddy Bamberger leaves his date at the outdoor Delacorte Theatre. Walking past Belvedere Lake, Bamberger steps on the snake and is bitten three times in his left thigh. Bamberger dies at East Side Hospital. With two deaths to solve, and the city in a panic, Captain Thomas Eastman of the NYPD is put in charge of finding the unidentified snake in Central Park – an area covering 840 acres, of which 150 is water. The Reverend Sanctus Milanese of the Church of Purification proclaims that the snake is Satan, or Satan’s messenger.

Captain Eastman recruits Mark Converse, a young herpetologist, to locate the snake. Jane Redpath, a graduate student, takes photographs in the menagerie at night. She is accompanied by her boyfriend, Jeff, a former football player at Columbia. Jeff is bitten on his forearm, and dies at East Side Hospital. The snake then bites Alvis Parkins, a 15-year-old boy, twice in the neck, but Alvis is run over by a car before he can reach a hospital. Fortuitously, Redpath took a photo of the snake, that can now be identified for the correct antivenin.

Later, the snake chases a rat into an apartment and bites a family from Trinidad: Webster McPeak, wife Emily, son Webster Junior, and daughter Charlene. Even with black mamba antivenin, Emily and Charlene die at West Side Hospital. On the twelfth day of the heat wave, Converse spots the snake sunning on a rock in the East Meadow, but a police helicopter scares the snake away. A follower of Reverend Milanese named Graham Black is also searching for the snake. Black is bitten on his right leg and receives the antivenin. The police fire Converse. Reverend Milanese organizes Operation Pillar of Fire to burn the snake out of Central Park. The snake escapes and bites a couple three times in the back of a taxi. Another Milanese disciple is bitten by the snake after it is beheaded.

But it’s not over yet… the snake leaves 13 eggs in her burrow in Central Park!

It’s interesting to note that on page 56 in the book, a television newscast shows the milking of a Russell’s viper’s venom at a Brazilian snake farm. The film is narrated: “Not all snake poison is malign. The venom being taken from this Russell’s viper will be used as a coagulant for persons suffering from hemophilia.”

Richard comments, “The simplest of fears can sometimes be the most terrifying. The possibility of a single snake terrorizing an entire city seems realistic. The snake bites 11 individuals, killing at least six, plus she has the opportunity to bite numerous other New Yorkers during her short stay in Central Park. The revelation that Russell’s viper venom has been used to treat hemophilia as a topical hemostyptic is correct. The novel, however, does not reveal that the product has been commercially available from Burroughs Wellcome and Company as Stypven, and from Boots as Rusven. A Russell’s viper venom dilution of 1:10,000 clots hemophilic blood in 17 seconds. The commercial product uses a 1:100,000 solution, while the venom is still active at 1:1,000,000,000.”

I’ve heard of transgenic animals that are milked to collect factor, but never milking a snake for its venom to clot blood! Since Halloween is cancelled most everywhere due to the pandemic, read a good scary book this Halloween!