(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.
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