What is hemophilia?
Hemophilia is a rare, benign (noncancerous) bleeding disorder. It's almost always an inherited condition that occurs when the blood doesn't make enough blood-clotting proteins. As a result, people with hemophilia may bleed spontaneously or bleed longer when injured than if the blood clotted normally. Depending on the severity, this can lead to serious health complications when left untreated. However, most people with hemophilia who receive treatment live a normal quality of life and life expectancy.
Symptoms and risk factors
What are the signs and symptoms of hemophilia?
Hemophilia symptoms will vary based on the severity of the condition. Typically, the most common signs include unusual or excessive bleeding. Other signs may include:
- Spontaneous bleeding (e.g., a bloody nose)
- Bleeding unusually long after surgery or a significant trauma
- Large bruises after mild injuries (a sign of bleeding under the skin)
- Joint pain (from internal bleeding in the ankles, knees, hips, or shoulders)
- Headaches, double vision, or fatigue due to bleeding in the brain
- Excessive bleeding after circumcision at birth
- Blood in urine or stool
Who is at risk for developing hemophilia?
Hemophilia occurs when people are born without sufficient clotting factor VIII (hemophilia A) or clotting factor IX (hemophilia B). Most of the time, it's passed down through genes, which means if you have a family member with hemophilia, you have an increased risk of inheriting the condition.
Males are far more likely to inherit this bleeding disorder than females. Girls can also develop the condition, but symptoms tend to be milder.
Screening and diagnosis
How is hemophilia detected?
Family members who know they have hemophilia may ask that their baby be tested before or after birth. Other times, males may be diagnosed at birth after excessive bleeding following circumcision or another symptom.
If you have symptoms, your doctor will ask you about your family medical history and recommend various blood tests that evaluate:
- Your complete blood count (CBC)
- If the blood is clotting properly
- How quickly blood clots
- Specific clotting factor levels which impact the severity of your condition
Can you prevent hemophilia?
No, because hemophilia is primarily passed down from parent to child, there is nothing you can do to prevent this bleeding disorder.
Types of hemophilia
What are the types of hemophilia?
There are three primary types of hemophilia:
- Hemophilia A: This is the most common form of hemophilia, caused by insufficient clotting factor VIII.
- Hemophilia B: Also called Christmas Disease, this type is linked to inadequate clotting factor IX.
- Hemophilia C: This is the rarest type, occurring in people who don't have enough clotting factor XI.
Depending on the clotting factor levels, hemophilia can range from mild to moderate or severe.
What is acquired hemophilia?
In rare cases, people can develop hemophilia despite having no family history. Called acquired hemophilia, this can occur when someone's immune system makes antibodies that attack clotting factor VIII. It tends to affect pregnant women and those between 60 and 80 years old. Fortunately, most cases of acquired hemophilia resolve with treatment.
Treatments
How is hemophilia treated and managed?
Although there is no cure for hemophilia, healthcare providers can help you manage the condition by increasing missing clotting factors. Called replacement therapy, this involves intravenous injections that use one of two therapies:
- Plasma-derived factor concentrates: These clotting factors come from donated human plasma.
- Recombinant factor concentrates: This newer type of therapy uses genetically-engineered clotting factors.
People with severe hemophilia may receive prophylactic injections regularly to prevent future bleeding. Others with mild or moderate hemophilia may use them to stop bleeding episodes on-demand, such as after an injury or surgery.
Hemophilia inhibitors
Some patients may develop antibodies (inhibitors) that prevent the clotting factors from stopping bleeding. As a result, patients receiving clotting factor concentrates should get tested for inhibitors at least once a year. This is a serious complication that makes it more difficult to stop and treat bleeds. Hematologists, or blood doctors, can help to manage inhibitor levels using specialized treatments.
Can hemophilia-related bleeding episodes be prevented?
You can't always prevent bleeding episodes. However, the National Hemophilia Foundation recommends people with bleeding disorders "Do the Five" steps to avoid or reduce the chances of complications:
- Get checked annually at a Hemophilia Treatment Center (HTC)
- Get vaccinated for Hepatitis A and B.
- Treat bleeds early (within one hour) and adequately.
- Exercise and maintain a healthy weight.
- Seek regular testing for bloodborne infections.
Looking for expert care?
With multiple locations throughout the region, patients have access to many of the nation’s renowned cancer specialists offering high-quality care, second opinions, and a chance for better outcomes close to where they live and work. Georgetown Lombardi Comprehensive Cancer Center, one of the nation’s comprehensive cancer centers designated by the National Cancer Institute (NCI), serves as the research engine allowing patients access to clinical trials that often lead to breakthroughs in cancer care.
Our providers
Location: Change location Enter your location
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Pedro E Alcedo Andrade, MD
Hematology
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Ravi Krishnan Anandakrishnan, MBBS
Medical Oncology
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Catherine Meyers Broome, MD
Benign Hematology & Hematology
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Kevin Y. Chen, MD
Gastrointestinal Medical Oncology, Medical Oncology & Hematology Oncology
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Julia Cunningham, MD
Benign Hematology & Hematology Oncology
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Rumaisa Hameed, MD
Hematology Oncology
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Craig M Kessler, MD
Benign Hematology & Hematology
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Salem Kim, MD
Hematology Oncology
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Shweta Kurian, MD
Hematology Oncology & Medical Oncology
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Hira Latif, MD
Hematology Oncology
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Kamyar Nader, MD
Myeloma, Lymphoma, Leukemia, Hematology & Hematologic Malignancy
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Aarthi Ganesh Shenoy, MD
Hematology
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Hedy P. Smith, MD, PhD
Hematology
Our locations
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MedStar Georgetown Cancer Institute at MedStar Georgetown University Hospital
3800 Reservoir Rd. NW Washington, DC 20007
MedStar Georgetown Cancer Institute at MedStar Franklin Square Medical Center
9103 Franklin Square Dr. The Harry and Jeanette Weinberg Cancer Institute Suite 220 Baltimore, MD 21237
MedStar Georgetown Cancer Institute at MedStar Washington Hospital Center
110 Irving Street, NW Washington, D.C., 20010
MedStar Franklin Square Cancer Center at Loch Raven Campus
5601 Loch Raven Blvd. Russell Morgan Building First Floor Baltimore, MD 21239
MedStar Georgetown Cancer Institute at MedStar Health Bel Air Medical Campus
12 MedStar Blvd. Ste. 180 Bel Air, MD 21015
Why choose us
Bleeding disorders are highly complex, which is why hemophilia requires care from a specialized team of experts who work together across medical specialties to determine the best approach for you. Patients of all ages choose MedStar Health for hemophilia treatment because we offer:
- Federal designation as a Hemophilia Treatment Center (HTC): A study conducted by the Centers for Disease Control and Prevention (CDC) showed that people with hemophilia who sought care from an HTC were 40% less likely to die from a bleeding-related complication than those who did not.
- Comprehensive, multidisciplinary approach: As a comprehensive HTC, patients benefit from access to a range of healthcare specialists in hematology (blood medicine), orthopedics, physical therapy, pathology, nursing, social work, and more to help patients with hemophilia live long, healthy lives.
- Nationally-recognized blood doctors: Our hematologists have a reputation for being experts in diagnosing and treating bleeding and clotting disorders, including hemophilia and sickle cell disease.
- An emphasis on prevention: Because awareness can help to minimize serious bleeding-related risks, we're dedicated to preventative medicine and education for patients, their families, and the community.
- Convenient, seamless care: With several locations throughout the Maryland and Washington, D.C., region, we offer specialized hemophilia care close to where you live and work.
Clinical trials and research
Clinical trials
Clinical trials are studies that help blood doctors and researchers better understand different diseases and disorders, including the effectiveness of medications and therapies to prevent or reduce the severity of bleeding episodes.
Research
Through our research engine, the Georgetown Lombardi Comprehensive Cancer Center, we're proud to apply the latest advances in research, ensuring our patients receive the most up-to-date, evidence-based care available.