medical IDs for Von Willibrand disease

Medical IDs for Von Willebrand Disease

The confidence to live with Von Willebrand disease

As the most common inherited bleeding disorder, Von Willebrand disease affects each person diagnosed differently. Understanding this disorder, how to prevent complications, and how to manage it can help you lead a healthy, active life.

A Von Willebrand disease diagnosis can feel overwhelming. The good news is, with better knowledge of the symptoms and complications VWD can cause, and how to treat them, you can be well-prepared for any emergency.

A medical ID for Von Willebrand disease from MedicAlert gives you added confidence and peace of mind, knowing that you have a trusted partner at your side for any unexpected challenges.

How MedicAlert protects those living with Von Willebrand disease

One thing you shouldn’t worry about is what could happen if there’s an emergency. MedicAlert’s protection plans offer benefits that extend beyond the ID, providing safety and peace of mind for people living with Von Willebrand disease, their families and caregivers.

24/7 Emergency Response

Our team provides first responders the information they need to provide fast, accurate care.

Digital Health Profile

All your vital information, all in one place for you and your caregiver.

Emergency Contact Notification

In an emergency, we connect families so that no one is alone in a crisis.

Patient Instructions

Share the information that’s important to your care, such as use of rescue medications or contraindication for tests like MRIs.

Pair a medical ID for Von Willebrand disease with the protection plan that’s right for you.

What exactly is Von Willebrand disease?

Bleeding disorders are caused by deficits in proteins in the blood called clotting factors. In Von Willebrand disease (VWD), the affected clotting factor is called von Willebrand factor (VWF). Due to an inherited problem with this factor, people with Von Willebrand disease are either missing or low on this protein needed for clotting.

Because of this, people with Von Willebrand disease will bleed more than usual if they get a cut, have a nosebleed, or when people assigned female at birth experience bleeding during menstrual cycles.

Von Willebrand disease is not as severe as some of the other bleeding disorders that involve other factor deficiencies.

There are four types of von Willebrand disease, with three being the most common:

  • Type 1–  affects 60%-80% of people diagnosed with VWD, with VWF present in lower amounts (20%-50% of normal levels). This causes mild symptoms.
  • Type 2– affects 15%-30% of people diagnosed with VWD, with VWF present in normal amounts, but functioning incorrectly. This causes mild to moderate symptoms.
  • Type 3– affects 5%-10% of people diagnosed with VWD, with very low levels or no VWF in the blood. Sometimes, another factor called Factor VIII is also low. This causes severe symptoms.
  • Acquired VWD– this is the least common form of VWD, and is not inherited. Instead, it develops after taking certain medications, or due to some other health conditions, such as cancer, lupus or other autoimmune disorders, or heart disease.

Overall, von Willebrand disease affects 1% of the U.S. population, or 3.2 million people.

Having a medical ID for Von Willebrand disease helps calm your nerves in situations where emergency medical care is required. Let MedicAlert bolster your voice and give doctors instant access to your medical history for the fastest best possible treatment.

Help others help you. Wear a medical alert ID bracelet or necklace engraved with important information for emergency responders and healthcare providers.

Centers for Disease Control & Prevention

What causes Von Willebrand disease?

The Cleveland Clinic describes Von Willebrand disease as a genetic disease that causes genetic mutations that interfere with your body’s production of a specific clotting factor (VWF). This genetic mutation is passed on from a person’s parents, either one or both.

Von Willebrand factor helps platelets (the cells that help blood clot) stick to blood vessel walls after an injury, and also helps to carry another clotting factor, factor VIII, to help the blood clot.

What are the symptoms and complications of Von Willebrand disease?

The symptoms and potential complications of Von Willebrand disease depend on the type of VWD a person has. People with type 1 VWD may not even be aware they have the disorder. In types 2 and 3, more serious symptoms may occur.

Common symptoms include:

  • More bleeding than usual after an injury, surgery, or dental treatment
  • Easy bruising and/or bruises that are firm or lumpy
  • Heavy and/or longer than usual menstrual bleeding
  • Frequent nosebleeds that last for 10 minutes or longer
  • Blood in the urine or stool
  • Heavy bleeding during labor and delivery
  • Large blood clots (larger than 1 inch in diameter) during menstrual bleeding
  • Needing to change menstrual pads or tampons more than once an hour, or use extra layers of pads
  • Problems with anemia, which can cause fatigue and shortness of breath

If you have type 3 VWD, you can have severe bleeding episodes and complications, including:

  • Bleeding into soft tissues and joints
  • Severe pain and swelling during joint bleeds
  • Excessive and dangerous bleeding from other sites
  • Risk of death

What to engrave on your MedicAlert medical ID for Von Willebrand disease:

MedicAlert offers free custom engraving on all our von Willebrand bracelets and medical ID products. Engravings on medical IDs for Von Willebrand disease should include any critical medical information that can protect and save lives in an accident or medical emergency, for example:

  • Medical history, including type of von Willebrand disease
  • Medications, including rescue medications used
  • Allergies
  • Any other important information you want to be sure is available immediately in an emergency
medical IDs for Von Willibrand disease

Sample engraving. Consult our team if you need help engraving your medical ID for Von Willebrand disease.

How do you diagnose von Willebrand disease?

Diagnosing von Willebrand disease is best done at a hemophilia treatment center (HTC), where specialists called hematologists have access to sensitive tests that can help identify bleeding disorders. They can also assist with your ongoing care after diagnosis.

Tests performed include:

  • Von Willebrand factor antigen, to measure the amount of VWF in the blood
  • Blood clotting times
  • Platelet function

Because VWD is affected by stress, illness, exercise, birth control pills, and other factors, sometimes more than one round of testing is needed. Finding von Willebrand factor below 50% of normal helps to confirm a VWD diagnosis.

MedicAlert Foundation is proud to partner with NORD to provide support, educational resources and tools to help those affected by rare disease live more safely and confidently.

How do you treat von Willebrand disease?

Treatment of von Willebrand disease depends on the type of VWD a person has and how severe their symptoms are. Some treatments may be used in particular as prevention of complications due to surgery or dental work.

Common treatments for VWD include:

  • Desmopressin– this hormone helps to increase the amount of von Willebrand factor in the blood.
  • Infusions of von Willebrand factor– these can be given before medical and dental procedures, to stop a severe bleeding episode, or on a regular basis to treat type 3 VWD.
  • Antifibrinolytics– these medications stop clots from breaking down.
  • Birth control– to help increase VWF with estrogen and decrease menstrual bleeding.

For bleeding episodes that cause an emergency, such as a joint bleed, there are two classes of medication available that patients can use “on-demand” to stop an episode: recombinant von Willebrand factor (Vonvendi) and human plasma-derived concentrates (Alpanate, Humate-P, and Wilate).

In addition to medications, you can take certain steps to reduce your risk of complications, too:

  • Avoid activities like contact sports that increase your risk of injuries
  • Be sure to tell all doctors and dental care providers of your VWD history
  • Avoid aspirin, non-steroidal anti-inflammatories (NSAIDs) like ibuprofen, fish oil, vitamin E, or turmeric unless your healthcare provider has instructed you to

It’s important to work with your doctor on a treatment plan that works to keep you safe in an emergency. This includes wearing medical IDs for Von Willebrand disease at all times so that your history of VWD and any on-demand medications you use is available to first responders in an emergency.

If you’re unable to share these details yourself, MedicAlert can be your voice, ensuring your safety and even saving your life.

How medical IDs for Von Willebrand disease combined with MedicAlert  Membership provide peace of mind

Anytime a person has a chronic medical condition, details about their health history must be easily available to first responders in an emergency. If you have a von Willebrand disease diagnosis, sharing details about your history and prescribed treatment in these situations is crucial.

A high-quality medical ID for Von Willebrand disease is the most important part of making sure first responders have access to this kind of information quickly. With 4 million lives saved over the past 65 years, you can have confidence that MedicAlert offers you a high level of protection in an emergency.

Along with MedicAlert’s globally recognized symbol for medical emergencies, you also have the option to add membership with a MedicAlert Protection Plan to your ID. With a Protection Plan, you have the benefit of additional support for emergencies, such as:

  • We’re your voice:  If you can’t speak for yourself due to a medical emergency, your ID will speak for you – informing others about your Von Willebrand disease and any medications you’re taking.

  • 24/7 emergency protection:  In an emergency, the MedicAlert team will relay all of your critical medical information to first responders, no matter where or when your emergency happens.

  • Always connected:  You should never be alone in an emergency. That’s why MedicAlert will reach out to your designated contacts if you are unable to do so.

  • Live with peace of mind and confidence:  MedicAlert will be there for you every step of the way. You’ll have the confidence and freedom to live your life with Von Willebrand disease, knowing we’ve got you covered.
DISCLAIMER: THIS WEBSITE DOES NOT PROVIDE MEDICAL ADVICE. The information in this article is presented for educational purposes only and is not intended as a substitute for professional medical advice, diagnosis and treatment. Always seek the advice of a physician or other qualified healthcare provider for any questions you may have regarding a medical condition or treatment.