October 2024

Women and hemophilia: evolving knowledge, raising awareness, and sharing stories

admin October 27, 2024

Thanksgiving is all about quality time with loved ones. This year, November 28 is also National Family Health History Day, which encourages families to get together and share health experiences. Stories from relatives can help us better understand our own health risks—and its helpful information to share with your care team. It reminds me why it’s so crucial to share stories with each other. As we approach the 35th anniversary of my book Raising a Child with Hemophilia, which included stories from 125 families in the hemophilia community, I want to continue the tradition here! In this blog, Sanofi introduces you to a woman living with hemophilia, Kyrie, who shares how hearing about her mother and grandmother’s experiences with hemophilia shaped her own journey of self-advocacy.

Sponsored by Sanofi

While hemophilia is more common in men, women can also experience symptoms and receive a diagnosis. Because of a traditional
misconception that women are only carriers of hemophilia, they have historically not been tested and treated for the condition.1 This is
changing, thanks to emerging understanding and awareness of hemophilia in women.

Kyrie Smith lives with hemophilia and works as a Community Relations and Education (CoRe) manager at Sanofi. We sat down with her to hear how her family’s experience with hemophilia inspired her to get the care she needs, and how she’s empowering other women to do the same. 

Please note that Kyrie’s story is hers alone. While there are common threads, everybody’s experiences with hemophilia will be different.

A legacy of advocacy

Photo caption: Kyrie and her grandmother, who was treated for hemophilia at a time when it was uncommon for women to be diagnosed.

Kyrie’s family history with hemophilia goes back to her grandmother. According to Kyrie, her grandmother was one of the first women to receive access to on-demand factor treatment for bleeds as they occurred. Kyrie credits her grandmother’s self-advocacy with helping her get treatment at a time when it was uncommon for women to be diagnosed, let alone treated.

“The ability for my grandmother to be prescribed factor to control a bad leg bleed was quite novel at the time,” Kyrie says. Hearing her grandmother’s story became her guiding light. “While she is no longer with us anymore, I often find myself thinking about her strength and resilience.”

Hemophilia affects both women and men in Kyrie’s family. Since Kyrie was a carrier of hemophilia and could become symptomatic, her mother advocated for Kyrie’s factor activity levels to be checked during her brother’s annual appointments. Her mother knew how women in the family experienced hemophilia, empowering her to have effective conversations with Kyrie’s doctor to get the care her daughter needed. 

“I’m thankful for my mother’s persistence, as I was diagnosed so early in my childhood, when many women—including my mother—are often diagnosed later in life,” Kyrie says. “I am very proud to come from a long line of strong women who have advocated for the health of their family as well as themselves.”

Strength in sisterhood
Kyrie was first diagnosed as a symptomatic carrier of hemophilia and was prescribed a treatment to address bleeds and other symptoms as they occurred. A few years later, her diagnosis was updated to mild hemophilia.

“This change was due to the strong women and advocates in the hemophilia community that helped evolve the definition of symptomatic carrier to mild hemophilia, which is defined by factor activity levels,” Kyrie says. “I am honored to now join them in their work to increase visibility and voices of women with hemophilia.” While opening up about hemophilia can feel vulnerable, it also creates space to inspire others to better manage their health, too.

By working with her healthcare team, Kyrie has been able to manage her condition. That doesn’t mean, however, that the situation is without its challenges.

“From missing sports practices in high school to switching cardio workouts to avoid overworking my joints and managing pain, I’ve had to make some compromises along the way,” Kyrie says.

She’s grateful for the support and encouragement she’s received from the hemophilia community to help her get through difficult times. Kyrie started attending hemophilia camps at age 7, an experience she considers central to her continued sense of community.

“By having a mentor to look up to, or a peer to talk through an issue with, I’ve made lifelong friends from my time at hemophilia camps and other chapter or national events,” says Kyrie.

When to start asking questions
Awareness, testing, and diagnosis of hemophilia in women are increasing.1 It can be difficult, however, to know whether the bleeding you experience is normal or abnormal. When in doubt, it’s best to speak to your doctor to discuss what’s going on.

The common signs of hemophilia in women include:2

  • Heavy menstrual periods, such as soaking through one or more pads or tampons every 2 hours or less3
  • Low in iron or have anemia
  • Frequent nosebleeds that last longer than 10 minutes
  • Bleeding from cuts lasting longer than 5 minutes
  • Easily bruised (raised and larger than a quarter, happening on a weekly basis)
  • Joint bleeds (pain, swelling, unusual sensations, warmth, loss of motion)
  • Family history of a bleeding disorder
  • Heavy bleeding from surgery

If you or someone you care about is experiencing the signs and symptoms above, consider reaching out to a doctor to explain what’s happening and get more information. If hemophilia runs in the family, it’s even more important to watch for these symptoms to help ensure all women get the care and support they need.

Coming full-circle
Kyrie now works as a Sanofi CoRe, which gives her the opportunity to pay forward the information and connection she has experienced from within the hemophilia community.

“Because the hemophilia community has played such a large role in my life, I want to continue giving back, being a resource for the next generation,” Kyrie says. “As a CoRe, I am able to connect with various members of the community no matter where they might be in their hemophilia journey. It could be a new parent navigating hemophilia care for their child, or it could be a young adult working to manage their hemophilia care independently.”

While everyone’s experiences with hemophilia are unique, Kyrie’s personal path gives her extra insight into what members of the community are going through.

“When I have the opportunity to connect with a young girl who is having hemophilia symptoms and needs to advocate for herself, I can really relate because I’ve been in her shoes,” Kyrie says. “The road to diagnosis and treatment can be long and confusing, but there are so many reasons to keep going and so many people to help you do just that. I hope by sharing my story, others will too, and together, we can continue empowering the hemophilia community to advocate for their care and supporting those in the earliest stages of their hemophilia journey.”

If you have a family history of hemophilia or you’re experiencing symptoms, you’re not alone. Make it a resolution to prioritize health in the new year and reach out to your doctor to start conversations about your care.

To learn more about women and hemophilia, including how it’s inherited, how it presents, and how to be your best self-advocate, visit RedefiningHemophilia.com.

This is a paid public announcement from Sanofi 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 Sanofi website. LA Kelley Communications always advises you to be a savvy consumer when contacting any company; do not reveal identifying information against your will.

  1. “Women can have hemophilia, too.” Centers for Disease Control and Prevention, https://www.cdc.gov/ncbddd/hemophilia/features/women-and-hemophilia.html
  2. “Women and bleeding disorders.” National Hemophilia Foundation, https://www.hemophilia.org/bleeding-disorders-a-z/overview/women-and-bleeding-disorders
  3. ​​Menorrhagia (heavy menstrual bleeding).” Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/menorrhagia/symptoms-causes/syc-20352829

MAT-US-2303664-v2.0-09/2024

Pain and Gain

Laurie Kelley October 20, 2024

Each October 16 I give a silent thanks to one of the Massachusetts men who helped to eliminate pain in surgery: Dr. William Morton (1819-1868). He was born in Charlton, Massachusetts, where my grandmother grew up.

As a dentist, he witnessed the incredible pain his patients endured. During his time, there were no pain killers for surgery. Medicine was just at the beginning of becoming the profession as we know it today. Even as late as 1874 in the US, medical schools were little more than trade schools. Applicants didn’t need undergraduate degrees. There was no consensus on treatment, no models for medical studies. Most physicians still followed the Hippocrates theory of the “four humors.”  

Disease and deformity were rampant, especially in the overcrowded and teeming cities of the world. The cause of infection was not discovered yet; there was no understanding of germs. And the pain of surgery was intolerable. Limb amputation most common type of surgery and the “best” surgeons were the fastest: the best could remove a limb in five to ten minutes. But blood transfusions were not available yet, and patients often went into shock and died. It’s no surprise that prior to 1846 little elective surgery was done.

All of that changed on October 16, 1846. Morton first publicly demonstrated the use of inhaled ether as in surgery at Massachusetts General Hospital, in the now named “Ether Dome.” Just two weeks prior, he had performed a painless tooth extraction on patient Ebenezer Hopkins Frost, using ether. On October 16, using Morton’s ether, Dr. John Warren removed a tumor from the neck of a patient—without pain. The news spread like wildfire around the world. Oliver Wendell Holmes—physician, lawyer, poet, and founding father of the Supreme Court—dubbed it “anesthesia.”

The medical breakthrough was not without its controversy. Correct dosages were not yet known—that would be experimented with by Dr. John Snow of England. Morton’s partner, Dr. Wells, objected to Morton claiming to be the only one to have discovered this, and trying to patent it. Their partnership never recovered. The patent was never enforced, and ether soon came into general use.

Morphine had been first isolated between 1803 and 1805, and Merck began selling morphine commercially in 1827. With the invention of the hypodermic syringe in 1853, morphine use spread. Localized anesthesia began to be used in 1884 by injecting cocaine into the wound location. Pain was relieved, but addiction, even among doctors, spread.

MGH honors the October 16 event in its Ether Dome, which is open to the public. Between 1821 and 1868, more than 8,000 operations were performed there. Today it is a teaching amphitheater and historical landmark. Visitors can appreciate the architecture and study the artifacts related to the elimination of pain, so important to those suffering, like our patients with bleeding disorders.

Before whom, In all time, Surgery was Agony

By whom, pain in surgery was averted

Since whom, science has control over pain

— Morton’s tombstone, Mt Auburn Cemetery, Cambridge, Massachusetts

Writing Your Autobiography

Laurie Kelley October 13, 2024

Have you ever thought that your experiences with a bleeding disorder would be worthy of a book? That others would be educated, comforted, even entertained by your experiences?

Many have. And they’ve written their own story—an autobiography. I believe the first commercially published account was the classic Journey, by Robert K. and Suzanne Massie. For many parents in my age group, it was our first read about hemophilia, and it was scary. Of course, it detailed a time of raising a child with hemophilia in the 1960s, when treatment consisted of constant trips to the hospital to get plasma or cryoprecipitate. But it is expertly written.

It took a while for other autobiographies to follow, but eventually they did, concerned mostly with the HIV scandal. Eventually, other books followed, including stories about life with modern treatments, included children’s books (told “by” the child), books about athletes with a bleeding disorder, and more.

Unlike Journey, many of the books are self-published. This is a fast way to publish a book but risky. Many of the books are not properly edited. Some have typos, or lack organization. As I’ve been publishing books since 1990, and have a great editorial team, I’ve been approached by some people to help them write their autobiography. I offer my editorial services for free, but there are times when I will reject a story because of lack of focus, poor writing and authors who don’t want to accept advice.

I recently read a book by one of my favorite authors, Ray Bradbury. Zen in the Art of Writing is an easy book to read, full of practical tips, and motivating. Bradbury is a master. If you think you have a story good enough for an autobiography, consider buying and reading this great book as a start. At the very least, consider his sage advice. He emphasizes having passion, exercising your reading and writing skills (the first step in becoming a writer is to be a voracious reader) and be brave!

From the Master himself:

  1. The first thing a writer should be is excited. What do you want more than anything else in the world? What do you love, or what do you hate?
  2. Be passionate with abandon. Tomorrow, edit and cut. But today “explode—fly apart—disintegrate!”
  3. Write fast at first. The faster you write, the more honest you are. Bradbury wrote the draft to his masterpiece Fahrenheit 451 in only nine days.
  4. Practice writing—anything. Bradbury wrote at least a thousand words a day, from age twelve on.
  5. Don’t always look outward for ideas, look inward. Think, dream. Ponder your life. Tae long walks and let thoughts flow.
  6. Read poetry every day. Poetry is different than prose, and causes us to think differently, more creatively, which will help your writing.
  7. Read daily; find an author whose writing you like and can learn from.
  8. Use all your senses when you write: color, sound, taste, and texture.
  9. Edit! Find a good, professional editor and learn yourself how to cut. Bradbury writes of the author, “His greatest art will often be what he does not say, what he leaves out, his ability to state simply with clear emotion, the way he wants to go.”

And drum and crack the mind to awe,

To behold beauty yet perceive its flaw.

Then, flaw discovered, like fair beauty’s mole,

Haste back to reckon all entire, the Whole.

This done, pretend these wits you do not keep,

Go panther-pawed where all the mined truths sleep.

—Zen in the Art of Writing, page 157.

True Crime and VWD: The Staircase Saga

Laurie Kelley October 6, 2024

Crime stories—whether fiction or nonfiction—have always fascinated but seem even more popular than ever. Murder mysteries and whodunnits. Organized crime or the kid next door. True crime—often about murder—ironically has new life recently, with smash-hits on Netflix like Lover Stalker Killer, The Menendez Brothers and Dahmer.

Our amazing archivist from North Carolina, Richard Atwood, researcher and reader extraordinaire, has a particularly interesting true crime story—the Staircase saga.

He writes: “This true crime event has maintained a bizarre fascination over two decades of debate. On the night of December 9, 2001, author Michael Peterson found his wife, Kathleen, dead at the bottom of a back staircase in their Durham, North Carolina home, surrounded by blood spatter. The police suspected murder and arrested Michael, who was the last person to see Kathleen alive. During the 2003 nationally televised trial, the prosecution introduced evidence that, sixteen years earlier, Michael was the last person to see a certain Elizabeth Ratliff alive before she was found dead—surrounded by blood spatter—at the bottom of a staircase in Germany. It was revealed that Elizabeth Ratliff had von Willebrand disease, a condition that complicated the determination of her official cause of death. There were too many coincidences between the two deaths involving staircases.

“This Staircase saga has personal connections. The murder and trial were a big deal here in North Carolina, as well as nationally. My son and his family live a half mile from the Peterson house. After Michael’s murder conviction was overturned and he returned to Durham, my son reported that friends of his would see Michael working out in the gym—a practice picked up in prison—then add slyly that it was on the step machine. This black humor is prevalent in Durham where many, but not all, consider Michael guilty of murder. I should also add that the psychologist named Margie Fargo, who was the jury consultant for Michael’s legal defense team, was my date to our high school senior prom in Atlanta back in 1968. Margie continues to profess Michael’s innocence.

“The body of work under the name ‘The Staircase’ keeps expanding. The 2003 murder trial was broadcast live and thoroughly discussed on Court TV, the former cable television network. The author Diane Fanning wrote Written in Blood: A true story of a murder and a deadly 16-year-old secret that tore a family apart (2005). The French filmmaker Jean-Xavier de Lestrade released his almost seven-hour documentary The Staircase (2005) on Sundance (and later on DVD). To provide updates, R.J. Parker wrote The Staircase: murder of Kathleen Peterson (2018) and Aphrodite Jones wrote A Perfect Husband (2019). As an author, Michael Peterson wrote Beyond the Staircase (2020), a slightly biased version of events that describe his prison experience. There may be other books about the murder trial, the overturned conviction after eight years imprisonment, and the subsequent plea deal. Then filmmaker Antonio Campos released the HBO series The Staircase: limited series (2022), The eight episodes, lasting eight hours, first shown on HBO, then released on DVD, star Colin Firth and Toni Collett, both accomplished actors. This fictionalized account of true events (filmed in Atlanta, not Durham) provides alternative explanations without stating a definitive explanation. It’s good entertainment.

“While I admire the acting skills of Firth and Collett, I don’t feel that they accurately portray Michael and Kathleen Peterson—he is not sour enough. I’m also a fan of Juliette Binoche, who plays the documentary film editor.

“But my biggest complaint about all the Staircase contributions is that von Willebrand disease does not get enough attention. Dr. Henry Lee had an excellent expert witness explanation of blood spatter during the trial. And then there is the ‘owl theory.’ I have an owl that perches on a branch overhanging my Winston-Salem yard most days. He is peaceful, unlike the alleged ‘killer owl’ in Durham, 75 miles away. Michael sold the house in Durham to pay his legal bills – the new owners spent a fortune fixing up the house on four acres. Margie Fargo lives in Charlotte; I saw her at a high school reunion in Atlanta. Michael continues to live in Durham, though I haven’t heard whether he still works out at the gym; he is close to 80 now.

“If you want some good true-crime reading, or wish instead to binge watch, then consider something from The Staircase saga – and be like me, complaining that von Willebrand disease should get more attention.”

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