STM Blog
Finding the Missing Piece: One man’s journey to a von Willebrand disease diagnosis
Frank, a 65-year-old man, spent decades suffering from von Willebrand disease (VWD) without a diagnosis. His journey, marked by severe bleeds and uncertainty, changed when his granddaughter was diagnosed with VWD. This discovery led to Frank’s diagnosis and treatment with VONVENDI, which allows him to better manage his condition and regain control of his life.
Last Updated on October 19, 2025 by Daily News Staff
Finding the Missing Piece: One man’s journey to a von Willebrand disease diagnosis
(Family Features) “I wanted to live my life like there was nothing wrong, but the fear was always there.”
That’s how 65-year-old Frank described life with von Willebrand disease (VWD), the most common bleeding disorder, affecting more than 3 million Americans.
For Frank, the signs started early with nosebleeds so severe they seemed unstoppable. In his 30s, one gastrointestinal bleed required nearly 7 pints of blood to stabilize him – a staggering amount, considering most adults only have 8-12 pints total.
Life with VWD can mean living in constant uncertainty. Any injury, surgery or even simple dental procedure can trigger a dangerous bleed. Symptoms like frequent bruising or heavy menstrual bleeding in women can affect quality of life. The consequences for Frank, even before his diagnosis, were often urgent and life-threatening.
Hospital visits and bleeds became routine, draining both his body and spirit. Frank lost weight, struggled with temperature swings and each trip home from the hospital felt like borrowed time before his next bleeding episode.
Eventually, his body began rejecting the blood transfusions meant to treat him during these mysterious bleeding episodes – a complication known as hemolytic anemia. With few options left, Frank and his partner, Carla, faced a future filled with fear and uncertainty, unsure how much longer his body could keep going.
Journey to a Diagnosis
Like many living with VWD, Frank spent years searching for answers – managing symptoms without understanding their cause. Bleeds came without warning. Triggers were a mystery. A diagnosis felt out of reach.
Through it all, Frank and Carla were their own fiercest advocates. Carla became his second set of eyes and ears by researching symptoms, writing down questions and sitting beside him in countless exam rooms.
“I realized when he was in the hospital, I must be there with him,” Carla said. “I needed to be there when the doctors and the nurses were talking to him. I slept in his room to be there for morning rounds to make sure everyone had the correct information.”
For years, they pressed on without answers or an official diagnosis until 2013, when everything changed.
Frank’s granddaughter was diagnosed with VWD, which they learned is a hereditary bleeding disorder. In that moment, something clicked. After decades of uncertainty, Frank finally had a clue and a connection.
He and Carla immediately sought out VWD education. Testing confirmed what they suspected: Frank had been living with VWD all along.
“Getting the diagnosis was a turning point,” Frank said. “For the first time, we weren’t just waiting for the next bleed – we finally had a way to take control.”
A Path Forward
Frank finally found hope and a path forward. After discussing which treatment option may be right for him with his health care team, Frank began using VONVENDI® [von Willebrand factor (Recombinant)] on-demand to treat and control his bleeding episodes.
VONVENDI is the only von Willebrand factor (VWF) treatment made without human blood or plasma with approved uses in both adults and children with VWD. For someone whose body had begun rejecting transfusions, having a recombinant option was important. But more than that – it worked for Frank.
“Since starting VONVENDI, I feel like I finally found the right path forward for me,” Frank said. “I can control my bleeds when they happen, and I have a plan in place to treat the next one.”
The U.S. Food and Drug Administration recently approved an expanded indication for VONVENDI, which is now indicated for adults and children with VWD to treat and control bleeding episodes (on-demand), to prevent excessive bleeding during and after surgery (perioperative) and for adult patients only, to reduce the number of bleeding episodes when used regularly (prophylaxis). Please see below for Detailed Important Risk Information or click here for the full Prescribing Information.
With this expanded indication, VONVENDI can now help more patients like Frank – not just control bleeds but also try to prevent them. Frank and Carla know there’s no cure, but for the first time in a long time, they have a plan to address Frank’s VWD bleeds.
Visit VONVENDI.com or speak with your doctor to learn more about VWD and discuss if treatment may be right for you.
VONVENDI [von Willebrand factor (Recombinant)] Important Information
What is VONVENDI?
VONVENDI is used in adults and children with von Willebrand disease to:
- treat and control bleeding episodes
- prevent excessive bleeding during and after surgery
For adult patients only:
- reduce the number of bleeding episodes when used regularly (prophylaxis)
Detailed Important Risk Information
Who should not use VONVENDI?
You should not use VONVENDI if you:
- Are allergic to any ingredients in VONVENDI.
- Are allergic to mice or hamsters.
Tell your healthcare provider if you are pregnant or breastfeeding because VONVENDI may not be right for you.
How should I use VONVENDI?
Your first dose of VONVENDI for each bleeding episode may be administered with a recombinant factor VIII as instructed by your healthcare provider.
Your healthcare provider will instruct you whether additional doses of VONVENDI with or without recombinant factor VIII are needed.
What should I tell my healthcare provider before I use VONVENDI?
You should tell your healthcare provider if you:
- Have or have had any medical problems.
- Take any medicines, including prescription and non-prescription medicines, such as over-the-counter medicines, supplements or herbal remedies.
- Have any allergies, including allergies to mice or hamsters.
- Are breastfeeding. It is not known if VONVENDI passes into your milk and if it can harm your baby.
- Are pregnant or planning to become pregnant. It is not known if VONVENDI can harm your unborn baby.
- Have been told that you have inhibitors to von Willebrand factor (because VONVENDI may not work for you).
- Have been told that you have inhibitors to blood coagulation factor VIII.
What else should I know about VONVENDI and von Willebrand Disease?
Your body can form inhibitors to von Willebrand factor or factor VIII. An inhibitor is part of the body’s normal defense system. If you form inhibitors, they may stop VONVENDI or factor VIII from working properly.
Consult with your healthcare provider to make sure you are carefully monitored with blood tests for the development of inhibitors to von Willebrand factor or factor VIII.
What are the possible side effects of VONVENDI?
You can have an allergic reaction to VONVENDI.
Call your healthcare provider right away and stop treatment if you get a rash or hives, itching, tightness of the throat, chest pain or tightness, difficulty breathing, lightheadedness, dizziness, nausea or fainting.
Side effects that have been reported with VONVENDI include: headache, nausea, vomiting, tingling or burning at infusion site, chest discomfort, dizziness, hot flashes, itching, high blood pressure, muscle twitching, unusual taste, blood clots and increased heart rate.
Tell your healthcare provider about any side effects that bother you or do not go away.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
Please see VONVENDI full Prescribing Information.
©2025 Takeda Pharmaceuticals U.S.A., Inc., 500 Kendall Street, Cambridge, MA 02142. 1-877-TAKEDA-7 (1-877-825-3327). All rights reserved. TAKEDA and the TAKEDA Logo are registered trademarks or registered trademarks of Takeda Pharmaceutical Company Limited. VONVENDI is a registered trademark of Baxalta Incorporated. US-VON-1006v1.0 10/25
SOURCE:
Our Lifestyle section on STM Daily News is a hub of inspiration and practical information, offering a range of articles that touch on various aspects of daily life. From tips on family finances to guides for maintaining health and wellness, we strive to empower our readers with knowledge and resources to enhance their lifestyles. Whether you’re seeking outdoor activity ideas, fashion trends, or travel recommendations, our lifestyle section has got you covered. Visit us today at https://stmdailynews.com/category/lifestyle/ and embark on a journey of discovery and self-improvement.
The phrase “There’s only one race: human” is simple, hopeful and deeply appealing. It reminds us that beneath differences in skin color, ancestry, nationality and culture, we are members of the same human family.
We share the same basic needs. We want safety, dignity, opportunity, love and a better future for the people we care about. No racial category makes one person more human—or more deserving of respect—than another.
At its best, the phrase rejects the false idea that humanity is divided into separate biological races with different levels of intelligence, character or worth. Those beliefs have been used throughout history to justify slavery, segregation, colonialism and discrimination. Saying that there is only one human race can therefore be a powerful declaration of equality.
But the meaning of the phrase depends on how we use it.
Shared Humanity Does Not Mean Identical Experiences
Although race does not separate people into distinct biological types, racial categories still carry enormous social power. They have shaped laws, neighborhoods, schools, employment, policing, health care and access to wealth. Their consequences do not disappear simply because we say that everyone is human.
That is why “There’s only one race: human” should never become another way of saying, “I don’t see color,” when someone is describing racism or inequality.
Ignoring race does not automatically end racism. In some situations, it can prevent us from recognizing it.
If one group repeatedly encounters barriers that others do not, acknowledging those differences is not an attempt to divide people. It is part of understanding the problem honestly. We cannot repair an injustice that we refuse to see.
Our Differences Are Not the Problem
Human unity does not require sameness. Our cultural identities, traditions, histories and communities are not obstacles that must be erased before we can respect one another.
There is nothing contradictory about celebrating Black history, Latino heritage, Indigenous traditions, Asian American experiences or the many cultures that contribute to our society while also believing in our common humanity.
The problem is not that people have differences. The problem begins when those differences are assigned a hierarchy—when one identity is treated as the standard and another as inferior, threatening or less deserving.
Real unity allows people to bring their complete identities into the room. It does not demand that they leave their histories at the door.
A Statement That Should Lead to Action
If we truly believe there is only one human race, that belief should influence how we treat people. It should lead us to oppose discrimination even when we are not its target. It should make us question stereotypes, listen to experiences different from our own and defend the dignity of people whose backgrounds we may not fully understand.
Shared humanity is more than a comforting slogan. It is a responsibility.
It asks us to recognize that another person’s pain matters, even when it is unfamiliar to us. It reminds us that no community is disposable and that injustice against one group ultimately damages the society we all share.
One Human Family, Many Human Stories
To me, “There’s only one race: human” is most meaningful when it brings two truths together: we are fundamentally equal, and we do not all experience the world in the same way.
We can affirm that there is one human family without pretending racism has disappeared. We can value what connects us without erasing what makes our communities distinct. We can pursue unity while still confronting the inequalities that stand in its way.
Perhaps the fullest version of the message is this:
We are one human family. Our differences deserve respect, our histories deserve acknowledgment, and every person deserves equal dignity.
That is not merely an ideal. It is a standard by which we can judge our choices, our institutions and the kind of world we are building together.
What does the phrase “There’s only one race: human” mean to you? Share your perspective in the comments.
Sources and Related Links
- Universal Declaration of Human Rights — United Nations
Establishes that all people are born free and equal in dignity and rights. - What Are Human Rights? — United Nations Human Rights Office
Explains universal human rights and freedom from discrimination. - Using Population Descriptors in Genetics and Genomics Research — National Academies
Examines why race should not be treated as a substitute for human genetic variation. - AAPA Statement on the Biological Aspects of Race — American Association of Biological Anthropologists
Discusses the scientific evidence concerning race, human biological variation and institutional discrimination. - Race and Ethnicity — American Anthropological Association
An educational examination of race as a social classification and ethnicity as a cultural identity. - Talking About Race — Smithsonian National Museum of African American History and Culture
Resources for understanding racism, racial identity and their effects on society. - Race: Are We So Different? — Smithsonian Institution
Explores race and racism through biological, cultural and historical perspectives.
Stay Informed. Stay Curious.
Get the latest news, thoughtful commentary, inspiring stories and useful information delivered directly to your inbox. Subscribe to the STM Daily News newsletter and never miss the stories that inform, educate and connect our communities.
Lifestyle
California and Minnesota Face $1B Medicaid Funding Hold
The Trump administration is withholding more than $1 billion in Medicaid funding from California and Minnesota over disputed medical claims. A social-policy historian examines how concerns about fraud have historically been used to justify funding cuts and undermine public confidence in Medicaid.
Ben Zdencanovic, University of Cambridge
California and Minnesota Face $1B Medicaid Funding Hold
The Trump administration announced on July 21, 2026, that it’s withholding US$867 million in federal healthcare funding for California and $200 million for Minnesota – a total of more than $1 billion.
Federal officials said the two states had failed to provide sufficient evidence that a number of disputed medical claims were legitimate. These include bills for in-home care and other services covered by the two states’ Medicaid programs for low-income residents.
Medicaid administrators say the funds can be recovered if the states supply the requested documentation. But the action is highly unusual: Typically, Medicaid officials partner with states to conduct an audit when they suspect fraud, a careful process that often takes years.
It’s the second time in 2026 that the Trump administration has withheld or deferred federal Medicaid funds for several states, including California and Minnesota, because of alleged fraud and abuse. The Democratic governors of those states have called the decision a politically motivated attack on their constituents.
I’m a historian of social policy who led the first comprehensive historical overview of Medi-Cal, California’s statewide Medicaid system. I’ve found that U.S. leaders have long used the language of fraud and abuse to blur the line between correcting very real failures within Medicaid and – as I believe the Trump administration is currently doing – discrediting and defunding the program itself.
Slashing the safety net
The Medicaid restrictions are part of the Trump administration’s overall efforts to slash federal funding for the safety net.
The large tax-and-spending bill that Trump signed into law in July 2025 as the cornerstone of his second-term agenda pared eligibility for Medicaid by introducing work requirements for some adults. It is cutting close to $1 trillion in federal spending on the program over the next decade.
Researchers estimate that almost 12 million people, on top of the estimated 28 million without health insurance in 2025, could become uninsured by 2034 due to these changes. By mid-2026, more than 3 million people had already lost their insurance coverage due to Republican changes to the Affordable Care Act.
‘Padlocking’ the ‘cookie jar’
In February 2026, Vice President JD Vance, Health Secretary Robert F. Kennedy Jr. and Dr. Mehmet Oz, the administrator of the Centers for Medicare & Medicaid Services, or CMS, announced a new anti-fraud initiative called Comprehensive Regulations to Uncover Suspicious Healthcare.
Also known by its rather unsubtle acronym, CRUSH, this initiative is taking unprecedented steps to withhold and defer funds in response to suspected fraud. “CMS is done trying to catch fraudsters with their hands in the cookie jar,” Oz said in announcing CRUSH’s formation. “Instead, we’re padlocking the jar and letting them starve.”
To be sure, Medicaid fraud, waste and abuse – such as providers billing Medicaid for services that are unnecessary or never rendered – are very real problems that cost taxpayers billions of dollars annually. They do divert funds from the low-income and disabled Americans enrolled in the program.
But the Trump administration’s latest moves are part of a much broader history of weaponizing Medicaid fraud and abuse – both real and imagined. I see them as a politicized attempt to prove that Medicaid itself is wasteful, that state governments cannot be trusted to administer federal money, and that public benefits inevitably invite dishonesty.
Providing little oversight at the start
Medicaid was established, along with Medicare for older adults, in 1965 as part of President Lyndon B. Johnson’s “Great Society” reforms. Despite providing millions of Americans with health insurance coverage for the first time, these programs had few centralized mechanisms for the kind of federal oversight that could prevent and catch fraud and abuse.
And the sheer scale and complexity of the Medicaid system – joint federal-state funding, varying eligibility requirements, millions of enrollees and thousands of providers – created opportunities for questionable billing practices among providers.
The 1970s saw a number of highly publicized Medicaid scandals involving nursing homes, laboratories, pharmacies and so-called “Medicaid mills” – healthcare providers that sought to bill the government for large numbers of Medicaid patients for shoddy and often fraudulent care.
A series of high-profile congressional investigations spurred demand for stronger Medicaid oversight and enforcement. That led to the Medicare-Medicaid Anti-Fraud and Abuse Amendments of 1977, which established the national Medicaid Fraud Control Units program.
The state-run Medicaid Fraud Control Units received generous federal matching funds to investigate and prosecute fraud.
The most serious Medicaid fraud was generally committed by healthcare providers and contractors, not patients. Medicaid Fraud Control Units were principally responsible for investigating providers, while also prosecuting the abuse and neglect of patients whose care was billed to Medicaid.
At the same time, however, Medicaid was becoming entangled in a broader political debate over social spending, whether many Americans were becoming too dependent on government benefits, and the alleged use of benefits by people who should not have received them. In the 1980s and 1990s, widely circulated stories about Medicaid exposed fraud and malfeasance by providers.
But disproportionately, they also highlighted the comparatively few instances of fraud by people enrolled in the program, such as cases where they submitted false receipts for covered medically related travel or sold drugs they obtained through Medicaid for free or at low cost.
Using Medicare fraud to justify spending cuts
The distinction between Medicaid and cash assistance programs, such as the Aid to Families with Dependent Children “welfare” program, frequently disappeared in political rhetoric. False or exaggerated stories that portrayed African American single mothers living extravagantly while fraudulently claiming welfare benefits became potent symbols of supposed government failure.
While campaigning as a presidential candidate, Ronald Reagan seized on this trope of the “welfare queen” in his attacks on social spending.
By the mid-1990s, opposition to welfare programs had become increasingly bipartisan. Politicians in both parties often used tales of Medicaid fraud on the part of providers and recipients to justify tighter eligibility rules and spending cuts.
Federal oversight expanded further with the Deficit Reduction Act of 2005, which created the Medicaid Integrity Program and strengthened federal oversight of state programs. The Affordable Care Act, the landmark healthcare legislation Congress passed in 2010, added new measures to screen providers and verify billing.
Concerns about Medicaid’s “integrity” became highly politicized in the debates surrounding the ACA. Critics of Medicaid expansion argued that increasing the number of people who could get health insurance through the program would increase fraud and improper enrollment. Supporters of expanding Medicaid to help more Americans gain health insurance maintained that anti-fraud rhetoric often disguised ideological opposition to the program’s expansion.
Blurring distinctions then and now
For the six decades that this program has helped millions of low-income Americans get healthcare, politicians have blurred the distinction between protecting Medicaid from abuse and using abuse to discredit Medicaid itself.
In my view, the Trump administration’s campaigns against California and Minnesota continue that pattern. It is using real weaknesses within Medicaid to advance much broader political arguments: that Democratic states cannot be trusted, that public benefits naturally invite abuse, and that withholding funds is itself a form of reform.
The result will no doubt be that fewer low-income Americans will be able to get the healthcare they need.
Ben Zdencanovic, Assistant Professor of U.S. History, University of Cambridge
This article is republished from The Conversation under a Creative Commons license. Read the original article.
💪 Your health journey starts here! Explore the latest health news, fitness tips, wellness trends, and healthy living advice. Share your thoughts in the comments and subscribe to the STM Daily News newsletter to stay informed and inspired every day.
Lifestyle
P.F. Chang’s Partners With Starlight Children’s Foundation for New “Spirit of the Zodiac” Giving Campaign
P.F. Chang’s launches Spirit of the Zodiac, a giving campaign supporting Starlight Children’s Foundation with Bao plush purchases and in-restaurant donations.
P.F. Chang’s Launches Spirit of the Zodiac Campaign to Support Starlight Children’s Foundation
P.F. Chang’s is launching a new annual charitable initiative designed to bring comfort to children during hospital stays. The Scottsdale-based restaurant brand announced Spirit of the Zodiac, a giving program inspired by the Chinese zodiac, with its inaugural campaign—Year of the Fire Horse: Spirit of Strength—benefiting Starlight Children’s Foundation.
What the campaign supports
Starlight Children’s Foundation serves more than 800 children’s hospitals nationwide, providing programs such as toy deliveries, hospital gowns, gaming stations, and other experiences intended to help kids feel more comfortable, connected, and supported during medical care.
How guests can participate (Sept. 2–Sept. 30)
From September 2 through September 30, 2026, guests can purchase Bao, a limited-edition horse plushie, for $10 through dine-in transactions at participating P.F. Chang’s restaurants (while supplies last). For each Bao purchased, P.F. Chang’s will donate an identical Bao plushie to Starlight for distribution through its hospital network—up to 20,000 donated plushies.
Guests can also support the campaign by rounding up their checks or making a direct donation in restaurant. The overall effort aims to raise $500,000 to support Starlight’s work with children and families.
Bonus offer for donors
P.F. Chang’s says guests who purchase Bao or make an in-restaurant donation of $10 or more to Starlight will receive an offer for a complimentary appetizer with the purchase of an entrée on a future dine-in visit, valid through October 31, 2026 (restrictions apply; participating locations only).
A story component for families
The campaign also includes a storytelling element: Bao’s journey will be featured in a digital story and an original children’s book by author Jenny Liao and illustrator Adriane Tsai, expected to publish later this month.
What to watch for
P.F. Chang’s and Starlight plan to continue the partnership beyond September, including in-hospital catering and plush deliveries in early October.
For more information, visit www.pfchangs.com/offers/spirit-of-the-zodiac. To learn more about the partnership, visit starlight.org/pfchangs.
💪 Your health journey starts here! Explore the latest health news, fitness tips, wellness trends, and healthy living advice. Share your thoughts in the comments and subscribe to the STM Daily News newsletter to stay informed and inspired every day.
