November 2020

Give on Giving Tuesday

Tuesday is “Giving Tuesday,” an annual event when Americans will donate up to $550 million to their favorite charities. It’s essential that this Giving Tuesday, on December 1, 2020 be as successful as last year. COVID has wreaked havoc with the economy, and people have much less disposable income. The unemployment rate is at 10%. But the needs are even greater. According to Project Bread, more than 80%, or 4 in 5, food banks are serving more people now than they did a year ago.

And while the pandemic has hit America hard, overseas, developing countries are struggling even more. That’s why I give to Save One Life, the international nonprofit I started in 2001. We support children with bleeding disorders who, even in the best of global health times, suffer cruelly. They often lack access to injections of factor, which would give them a normal life. This medicine is readily available in the US and other developed countries, but we forget about those in need who cannot get this medicine.

Save One Life offers one-to-one sponsorships with a child in need; scholarships for college or vocational school; microenterprise grants to those who wish to start businesses to sustain themselves, and camp funding for children to have some joy in their lives. And of course, medicine—factor to inject into their bloodstream to replace the missing protein that makes their lives painful and short. Look at our stats so far this year!

While we’ve been successful despite the challenges, each day we learn of more children in need. Help us to help them. Consider giving to Save One Life on Giving Tuesday. Visit our website to see if one of the beautiful children there speaks to your heart—they are waiting for a sponsor. I sponsor 17 myself! Or give, any amount, to our mission, so we can continue our wonderful work.

And… just give. To Save One Life, to an animal shelter, to a food bank… find your cause, and act. Many organizations need your support, so they can support those most in need.

A bone to the dog is not charity. Charity is the bone shared with your dog, when you are just as hungry as the dog. —Jack London

Letter to The NonMask Wearers

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

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.

Laurie Kelley and Renee Paper 2002

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

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.

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