Laurie Kelley

Remembering Our Veterans: Renée Paper

Laurie Kelley November 12, 2023

This past week we honored our veterans for their service to our country. This past week I also received a message from someone in the von Willebrand disease community, surprised and saddened that no one seems to remember one of our great veterans—Renée Paper, RN. Her date of passing was November 7, 2007, at age 49. So young, but she made a huge impact. She was a pioneer in VWD care for all. She should be and needs to be remembered. So much of the care we receive today for VWD we owe to Renée. This includes my book on VWD, A Guide to Living with von Willebrand Disease, which I originally wrote with Renée.

Renée had von Willbrand disease, and was an emergency room nurse in Nevada. She traveled and lectured frequently. She was a powerhouse when lecturing. I saw her absolutely command a room full of nurses and doctors with her photographic memory, brilliant knowledge of VWD and her deep-seated passion. She spoke with authority, compassion and a call to arms, for everyone to find unidentified VWD patients, get them the treatment they deserve and need, to stop the silent suffering of women. She herself had had a hysterectomy in her early 20s, rendering her unable to have children, when doctors did not correctly diagnose her with VWD and sought to end her uncontrollable bleeding. I think in part her burning dedication and fiery style of lecturing was fueled by the embers of what was left of her ability to control her life, to have children. She didn’t want this to happen to any other woman.

Renée Paper and Laurie Kelley at national meeting

If you never heard a Renée Paper speech, you missed some great speeches. One of my favorite lines by her was when she blamed the medical community for misdiagnosing women who had VWD as being “hysterical,” or “imagining” their illnesses. “You know why this happens?” she would bark out. “Because men dominate the medical scene! And you know why they don’t take us seriously? Because men don’t have uteri!” Leave it to Renée to always use the correct Latin plural of uterus.

She traveled with me to Puerto Rico and the Dominican Republic on lecturing tours together, and she and I presented in places as close as Connecticut and far away as Australia. She was brilliant; she was fun-loving. She could be irreverent yet compassionate. She loved animals, and one of her favorite gifts to her friends was to send a photo of herself each New Year’s with a different animal from different parts of the world: kissing a dolphin in the Caribbean; draping a boa constrictor around her neck in Mexico; nuzzling an alligator in New Orleans; atop a camel in the Canary Islands. Renée knew how to grab life by the horns and tame it, and she wanted others to do that, too, regardless of whether they had a disorder or disability.

Renée walked the talk: her message was always to get educated about VWD. Don’t let it keep you from enjoying life. Play the hand you were dealt. (Yes, she was from the Las Vegas area!) Play it and win.

Renée was a visionary leader. As an emergency room nurse in Nevada, she saw the need for a patient-based hemophilia organization and an HTC. Nevada had neither when she first lived there. Typical of Renée, she saw the need and figured out how to meet it. She founded Nevada’s first patient organization and HTC, both of which continue to this day. In fact, November 1 is Renée Paper Day in Nevada! How many people can claim such an honor?

So we remember an inspiring and action-oriented leader as one of our veterans. As if she knew the clock was ticking, she made incredible accomplishments that continue to benefit patients to this day. A legacy like that is the mark of a true leader.

Know Thyself—and Thy Medical History

Laurie Kelley November 5, 2023

“Know thyself” is a philosophical maxim, inscribed upon the Temple of Apollo in Delphi. It’s also part of a quote from Socrates, “To know thyself is the beginning of wisdom.” True wisdom is knowing… but also recognizing what you do not know, and what you need to learn.

November is National Family Health History Month, according to the US Surgeon General. This is an important national public health campaign to encourage all Americans to share their family medical concerns with family members, and to learn more about their own family health history.

I just turned 66, and am keenly aware that some of my family members, and many friends, are undergoing health challenges now. Kidney disease, cancer (a big one), heart problems… all of these can have a genetic component.

Hemophilia did not seem to run in our family—ours is the first known case in several generations. But diabetes is rampant. From an early age I’ve been careful about monitoring this, keeping my weight down, and staying active.

Knowing about your family health history of a disease can motivate you to take steps to lower your chances of getting the disease. Good places to start? Stop smoking—now. Exercise regularly (hike, bike, walk, swim) and change your eating habits. Get rid of poisonous soft drinks, limit alcochol. Family history is considered one of the most important risk factors for health problems such as heart disease, stroke, diabetes, cancer and even certain psychiatric disorders.

Knowing whether hemophilia “ran” in your family was important in family planning. For us, it was a surprise, but now we know the chances of hemophilia being passed on—an important thing for each child to know, for themselves and for their future partners. There are several ways to test for hemophilia pre-birth, and post birth.

Umbilical cord blood is now used to treat more than 80 diseases and disorders, including some that are transmitted to newborns. If you know your family’s health history, you can decide whether or not to store your newborn’s cord blood at birth. The stem cells from this cord blood could possibly be used to treat future diseases in your family.

There are free tools on-line to help start recording your family history. But start with your primary care physician, who will know the right questions to ask. Know thyself, thy body, thy health!

Blood Moon, You Knew Just What…

Laurie Kelley October 29, 2023

A partial lunar eclipse happened on October 28-29, visible on one side of the earth; this occurs during a full moon when the sun and the moon align on opposite sides of Earth. It’s sometimes called a “Blood Moon.” Why?

The term Blood Moon is used to refer to four total lunar eclipses that happen in the span of two years—called a “lunar tetrad.” The eclipses in a tetrad occur about six months apart. Lunar tetrads are rare, so it’s no surprise that sometimes special meanings are given to their occurrence.

Some religious scholars have called the eclipses Blood Moons after a verse in the Bible’s Book of Joel, which referred to the sun darkening and the moon turning red before the second coming of Jesus. The last lunar tetrad was in 2014 (check out our entry in HemaBlog!) and some people may have believed that this was a sign of end times.

But, we are still here!

Scientists believe that the moon may look red during a total lunar eclipse because of sunlight that is filtered and refracted by Earth’s atmosphere. From the website “earthsky.org”:

“The reason stems from the air we breathe. During a total lunar eclipse, the Earth lies directly between the sun and the moon, causing the Earth to cast its shadow on the moon. If Earth didn’t have an atmosphere, then, when the moon was entirely within Earth’s shadow, the moon would appear black and invisible.

“Thanks to Earth’s atmosphere, what actually happens is much more subtle and beautiful. Earth’s atmosphere extends about 50 miles above Earth’s surface. During a total lunar eclipse, when the moon is submerged in Earth’s shadow, there is circular ring around Earth – the ring of our atmosphere – through which the sun’s rays pass.

“Sunlight is composed of a range of frequencies. As sunlight passes through our atmosphere, the green to violet portion of the light spectrum is, essentially, filtered out. This same effect, by the way, is what makes our sky blue during the day. Meanwhile, the reddish portion of the spectrum is least affected.

“What’s more, when this reddish light first entered the atmosphere, it was bent (refracted) toward the Earth’s surface. It’s bent again when it exits on the other side of Earth. This double bending sends the reddish light onto the moon during a total lunar eclipse.”

We will have eight tetrads from 2001-2100. The first tetrad of the 21st century took place in 2003-2004, the second was in 2014–2015, and the next will be in 2032–2033, with the following eclipses: April 25, 2032, October 18, 2032, April 14, 2033 and October 8, 2033!

While you wait for it, Google music + Blood Moon and you will hear some interesting music, like this cool one from The Hives. https://www.youtube.com/watch?v=D7heQB5ST3g

Google “Blue Moon” and you will hear something completely different!

If you missed the full moon, partial eclipse and Blood Moon, prepare for it in ten years… which hopefully will not be end times!

Hematophages from Around the World

Laurie Kelley October 22, 2023

It’s Halloween season again, and always a fun time to look at the lore of blood-drinking creatures, known as hematophages. In the past we’ve looked at the relationship between vampires and hemophilia—some studies even thinking the lore of vampires may be started with cases of hemophilia, unknown at the time. What are other blood-drinking creatures from different cultures? I found this summary on the internet:

The Chupacabra, from Latin America, which drinks goat blood. It’s a bear-like creature with spines on its back. This myth dates back only to 1995, when a farmer in Puerto Rico found dozens of his sheep drained of their blood with small circular incisions on their bodies.

The Baobhan Sith, a fairy in Scottish lore that drinks human blood, and usually appears as a beautiful young woman wearing a long green dress that conceals the deer hooves she has instead of feet.

Rokurokubi is a kind of Japanese apparition, whose name means “pulley neck.” By day these are regular women. By night, their bodies sleep, while their necks stretch to amazing lengths and roam around. There are two types; the others’ heads come off and fly about, and feast on blood.

Lamashtu is a Mesopotamian goddess/demoness that drank the blood of children. She is depicted as a mythological hybrid, with a hairy body, a lion’s head with donkey’s teeth and ears, long fingers and fingernails, and the feet of a bird with sharp talons.

Jubokko, another Japanese apparition, was once a normal tree that eventually absorbed the blood from battlefields, and became alive as a spirit. Afterward, the tree only craved human blood. When someone passed by, the tree grabbed them with its long branches, pierced their skin, and sucked out their blood.

Yara-ma-yha-who, a creature from Australian Aborginal mythology. The creature looks like a red amphibian- man with a very big head, large mouth with no teeth and octopus-like suckers on the ends of its hands and feet. It lives in fig trees and, like the Jubokko, waits for an unsuspecting traveler to rest in its shade. The creature ambushes the traveler, using its suckers to drain his blood. Then, it swallows the traveler, and goes to sleep. Upon waking, it regurgitates the victim, who is alive, but shorter, and who in time becomes a Yara-ma-yha-who.

And finally, we return to vampires, the kind we are more familiar with, but from China. A jiangshi is known as a hopping vampire, created from a corpse when a cat jumps over it! It moves about by hopping with its arms outstretched, kind of like Frankenstein’s monster. It kills living creatures to absorb their qi, or life force. Like the vampire folk tales we are familiar with in the west, they prowl about at night, and sleep in coffins or dark places such as caves in the daytime.

All cultures seem to love a good scary story, don’t they? And blood seems to always be a component of scary tales—I had a few of my own when raising a child with hemophilia!

Insurance Expertise for Free

Laurie Kelley October 15, 2023

It’s that time of the year again… Open Enrollment, when you can change your health insurance policy or plan. But you can’t change unless you know what your needs are, and can calculate what your budget is and what expenses will be. Insurance is frustrating, it’s daunting, and with a bleeding disorder, it’s expensive.

But I just saw this on Facebook, which made me happy for two reasons: 1) a licensed insurance broker can help you get started for free, and 2) he’s a wonderful person I’ve known for a long time.

Meet Alexander Ell!

For over 10 years, Alex has helped over one thousand clients with their insurance across multiple states and numerous insurance companies. Alex’s goal is to walk you through the process, providing non-biased advice about the best plan for your needs and goals. His website helps you learn the basics of insurance, defines the many acronyms that insurance loves to use, and has a Frequently Asked Questions section.

On Facebook, he wrote: “Hey everyone! If you hear of any friends or family that need help with their Medicare or Health Insurance, please send them my way. I’ve been a licensed insurance broker for over 10 years. My services are free and I provide non-biased advice about the best plan for their needs and goals. I’m licensed in ID, NV, OR, WA, TX, GA, and FL. If you have any questions, please reach out to me. https://capitalrealm.com”

Alex has navigated the complex healthcare system for himself as he has hemophilia. Now he’s here to do the same for you! Contact him to get started with a free consultation today.