Bleeding disorder (hemophilia or von Willebrand disease)

Overview

Hemophilia mostly affects males. Von Willebrand disease affects both sexes and often shows as heavy periods and nosebleeds.

Hemophilia A and B mostly affect males. Von Willebrand disease is the most common bleeding disorder in both sexes.

Bleeding into joints can cause long-term damage if not treated.

Symptoms

Common signs:

• Easy bleeding or bruising

Less common

• Heavy periods
• Joint swelling

When to get medical care

Causes

Genes.

Does it spread or run in families?

• It isn't contagious. You can't catch it from someone else.
• It can run in families. Tell your doctor if a parent, brother, or sister has it.

Who is more likely to get it

• Family history

Diagnosis

Blood tests.

Treatment

Prevent bleeds.

Self-care

• Avoid aspirin and ibuprofen
• Wear medical ID
• Use ice and rest for joint bleeds
• Learn home infusion if prescribed

Prevention

To lower your risk or prevent problems:

• Wear a medical ID

Which doctor treats this

• Start with your primary care provider (family doctor or internist).
• They may send you to a hematologist (blood doctor).

Living with it

• Keep a simple diary of symptoms, triggers, and medicines to bring to visits.
• Bring a list of your medicines and questions to each visit.
• Stay active in ways that feel good to you.
• Get enough sleep and manage stress.
• Long-term illness can affect mood. Tell your doctor if you feel down or anxious.

Support groups and helplines

• National Bleeding Disorders Foundation: Local chapters and help for families.

Back to school, work, or sports

• Most people can keep working or going to school.
• Ask about changes that help, like extra breaks or a flexible schedule. Workers may be covered by the ADA. Students may get a 504 plan.

Children, pregnancy, and older adults

• Women: Heavy periods can be the first sign.

Pregnancy and breastfeeding

• If you're pregnant or planning to be, tell your prenatal provider about this condition.
• Don't start or stop any medicine on your own. Some are safe in pregnancy and some need to be changed.
• Ask before taking any pain reliever. The FDA advises avoiding ibuprofen and naproxen after 20 weeks unless your doctor says to.
• Breastfeeding: Most medicines are fine, but ask. The NIH LactMed database lists what's known about each one.

For caregivers

• Go to visits when you can and take notes.
• Keep a list of medicines, allergies, and doctors in one place.
• Learn the warning signs that need fast care.
• Take breaks and ask for help. Caregivers need care too.

Outlook

Manageable.

Modern treatments let most people live full lives.

Getting ready for your visit

Bring a list of your symptoms and medicines.

What to bring

• A list of your medicines and supplements
• Notes on when symptoms started and what makes them better or worse

Questions to ask

• Should my family be tested?

Research studies

Research studies test new ways to find and treat health problems. Some are looking for volunteers. Talk with your doctor before joining one.

Search ClinicalTrials.gov for studies on Bleeding disorder (hemophilia or von Willebrand disease)