For people with a family history of hemophilia, it's possible to determine during pregnancy if the fetus is affected by hemophilia. However, the testing poses some risks to the fetus. Discuss the benefits and risks of testing with your doctor.
In children and adults, a blood test can show a clotting-factor deficiency. Hemophilia is diagnosed at an average age of 9 months and almost always by age 2. Sometimes, mild hemophilia isn't diagnosed until a person undergoes surgery and experiences excessive bleeding.
While there's no cure for hemophilia, most people with the disease can lead fairly normal lives.
Treatment for bleeding episodes
Therapies to stop bleeding depend on the type of hemophilia:
- Mild hemophilia A. Slow injection of the hormone desmopressin (DDAVP) into a vein can stimulate a release of more clotting factor to stop bleeding. Occasionally, DDAVP is given as a nasal medication.
- Moderate to severe hemophilia A or hemophilia B. Bleeding may stop only after an infusion of recombinant clotting factor or clotting factor derived from donated human blood. Repeated infusions may be needed if internal bleeding is severe.
- Hemophilia C. Clotting factor XI, the factor missing in this type of hemophilia, is available only in Europe. In the United States, plasma infusions are needed to stop bleeding episodes.
Your doctor may recommend:
- Regular infusions of DDAVP or clotting factor. The infusions can help prevent bleeding. This approach may reduce time spent in the hospital and limit side effects such as damage to joints. Your doctor can show you how to perform the infusions.
- Clot-preserving medications (antifibrinolytics). These medications help prevent clots from breaking down.
- Fibrin sealants. These medications can be applied directly to wound sites to promote clotting and healing. Fibrin sealants are especially useful in dental therapy.
- Physical therapy. It can ease signs and symptoms if internal bleeding has damaged your joints. If internal bleeding has caused severe damage, you may need surgery.
- First aid for minor cuts. Using pressure and a bandage will generally take care of the bleeding. For small areas of bleeding beneath the skin, use an ice pack. Ice pops can be used to slow down minor bleeding in the mouth.
- Vaccinations. Although blood products are screened, it's still possible for people who rely on them to contract diseases. If you have hemophilia, consider receiving immunization against hepatitis A and B.
Treatment at Mayo Clinic
Mayo Clinic is a designated Comprehensive Hemophilia Center (HTC), with physicians who specialize in the diagnosis and treatment of hemophilia and other bleeding disorders. People who get care at an HTC are less likely than those who get care elsewhere to have bleeding complications and hospitalizations. At Mayo Clinic, doctors, nurses, social workers and physical therapists work together to reduce hospitalizations and to improve your quality of life.
Explore Mayo Clinic studies testing new treatments, interventions and tests as a means to prevent, detect, treat or manage this disease.
Lifestyle and home remedies
To avoid excessive bleeding and protect your joints:
- Exercise regularly. Activities such as swimming, bicycle riding and walking can build up muscles while protecting joints. Contact sports — such as football, hockey or wrestling — are not safe for people with hemophilia.
- Avoid certain pain medications. Drugs that can aggravate bleeding include aspirin and ibuprofen (Advil, Motrin, others). Instead, use acetaminophen (Tylenol, others), which is a safe alternative for mild pain relief.
- Avoid blood-thinning medications. Medications that prevent blood from clotting include heparin, warfarin (Coumadin), clopidogrel (Plavix) and prasugrel (Effient).
- Practice good dental hygiene. The goal is to prevent tooth extraction, which can lead to excessive bleeding.
- Protect your child from injuries that could cause bleeding. Kneepads, elbow pads, helmets and safety belts all may help prevent injuries from falls and other accidents. Keep your home free of furniture with sharp corners.
Coping and support
To help you and your child cope with hemophilia:
- Get a medical alert bracelet. This bracelet lets medical personnel know that you or your child has hemophilia, and the type of clotting factor that's best in case of an emergency.
- Talk with a counselor. You may be concerned about striking the right balance between keeping your child safe and encouraging as much normal activity as possible. A social worker or therapist with knowledge of hemophilia can help you cope with your concerns and identify the minimum limitations necessary for your child.
- Let people know. Be sure to tell anyone who will be taking care of your child — baby sitters, workers at your child care center, relatives, friends and teachers — about your child's condition. If your child plays noncontact sports, be sure to tell coaches, too.
Preparing for your appointment
Hemophilia is diagnosed at an average age of 9 months and almost always by age 2. You and your child may be referred to a doctor who specializes in blood disorders (hematologist).
What you can do
- Write down the symptoms your child has been experiencing, and for how long.
- Write down your child's key medical information, including other conditions.
- Make a list of all your child's medications, vitamins and supplements.
- Note whether anyone in your family has been diagnosed with a bleeding disorder.
Questions to ask your child's doctor
- What's the most likely cause of my child's signs and symptoms?
- What kinds of tests does my child need? Do they require any special preparation?
- What treatment do you recommend?
- What activity restrictions will my child need to follow?
- What additional steps can I take to ensure my child's safety?
- What can I do to help my child live as normally as possible?
- How will you monitor my child's health over time?
- What is my child's risk of long-term complications?
- Do you recommend that our family meet with a genetic counselor?
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask other questions during your appointment.
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may make time to go over points you want to spend more time on. You may be asked:
- What are your child's symptoms, and when did you first notice them?
- Have you noticed any unusual or heavy bleeding, such as nosebleeds or prolonged bleeding from a cut or vaccination?
- Have you noticed blood in your child's urine or stool?
- Has your child undergone any surgeries, and, if so, did the surgeon feel there was excessive bleeding?
- Have you noticed heavy bruises?
- Has your child complained of pain or warmth around his or her joints?
- Has anyone in your family been diagnosed with a bleeding disorder?
- Are you planning to have more children?
Sept. 26, 2014