Newly Diagnosed Hemophilia Patients
Hemophilia is diagnosed from blood samples taken by a doctor that measure the level of clotting factors present in the blood. Individuals who are missing or deficient in clotting factor VIII are diagnosed with hemophilia A and those missing or deficient in clotting factor IX are diagnosed with hemophilia B.
The severity of hemophilia is linked to the amount of clotting factor missing from the blood. Normal factor levels (or the amount of properly functioning clotting factor in the blood) range from 50%-150% (or, measured in international units per milliliter of blood, 0.50-1.5 IU/ml). Those with mild hemophilia have a 5%-40% factor level (0.05-0.40 IU/ml), moderate hemophilia have a 1%-5% factor level (0.01-0.05 IU/ml), and severe hemophilia have a factor level of less than 1% (0.01 IU/ml).
People with moderate to severe hemophilia are usually diagnosed as infants or young children due to the disease’s symptoms. Individuals with less severe hemophilia may not be diagnosed until they undergo a dental or surgical procedure that results in prolonged bleeding.
Hemophilia Treatment Options and Approach
Hemophilia is a lifelong condition that impacts every aspect of a patient’s life. A holistic approach to treatment and disease management can provide the right solutions for meeting the challenges of hemophilia. Often, a hemophilia patient’s treatment team will include medical staff such as hematologists, physical therapists, and dentists as well as health professionals like the staff at NCHS who assist with health insurance matters and obtaining treatment.
Treatment Guidelines for Managing Hemophilia
Uncontrolled bleeding can cause severe side effects or even death. Following a few simple safety and treatment guidelines can help avoid potential bleeding episodes and ensure proper treatment is available when needed.
General Hemophilia Safety Guidelines
- Wear protective gear before riding a bicycle, skating, or performing any activity during which injury may occur
- Keep a seat belt on during car rides
- Wear a medical bracelet
- Keep emergency contact information easily accessible
Hemophilia Treatment Guidelines
- Follow any prescribed treatment plan
- Maintain prophylactic infusion schedule
- Have enough factor on hand to last for at least one week
- Properly store factor and ensure it is not expired
Emergency Treatment Guidelines for Hemophilia
Emergencies can happen despite carefully managing symptoms and taking safety precautions. Preparing for an emergency is important for receiving timely intervention.
- Know the symptoms of spontaneous bleeding episodes and what to do
- Seek medical attention for trauma to the head/neck
- Have emergency procedures on hand
Living with Hemophilia
Hemophilia is a lifelong disease with no cure. By proactively managing symptoms, obtaining appropriate preventative treatments, and making healthy lifestyle choices, people with hemophilia can live long and full lives.
Hemophilia Community Groups
Community groups offer support and encouragement for people with hemophilia and their loved ones. NCHS is proud to partner with Powering Through
, an organization that gathers speakers to address overcoming the challenges of living with hemophilia, and Hope for Hemophilia
, a philanthropic organization that provides assistance for patients in need.