UNM Health System's Ted R. Montoya Hemophilia Program and Treatment Center's mission is to identify and care for New Mexicans with bleeding disorders. We are federally recognized as one of 130 treatment centers across the nation, so you will benefit from our state-of-the-art medical services, psychological support, education and research. The center is affiliated with the National Hemophilia Foundation and works collaboratively with the Center for Disease Control in preventing complications related to bleeding disorders.
Our goal is to prevent complications of hemophilia through prevention of bleeding episodes, early recognition of bleeding episodes that do occur, and the administration of appropriate treatment.
What is hemophilia?
Hemophilia is a genetic disorder that impairs a person’s ability to form blood clots. It is caused by the absence or deficiency of blood clotting proteins, either factor VIII or factor IX, resulting in prolonged bleeding. It is mostly an inherited condition, although there are rare exceptions, and it is much more likely to occur in males than in females. It occurs in about one of every 7,500 male births. Each child of a hemophilia carrier has a 50% chance of being affected. Fathers do not pass on the mutation to their sons, but all of their daughters are carriers due to hemophilia being an “X-linked” condition.
People suffering from hemophilia are able to form temporary scabs to prevent further blood loss, but a missing clotting factor makes it more difficult to maintain the clot. Hemophiliacs do not necessarily bleed more intensely than others, but they tend to bleed for longer periods of time. This is particularly dangerous in regards to internal injuries, especially in the brain. A major complication of this disease is joint damage or crippling arthritis due to repeated bleeding into the joints.
If there is a family history of hemophilia and a pregnant woman is a carrier or at risk of being a carrier, the baby can be tested at the time of birth. A blood sample can be drawn from the cord and tested for factor VIII and IX levels.
There are also prenatal options if there is a family history. Hemophilia can be diagnosed before birth by special genetic testing from the amniotic fluid. However, there are risks associated with this procedure and one should receive genetic counseling before deciding on this type of test.
Finally, if there is no family history by there is presentation of hemophilia due to prolonged bleeding from a circumcision, heel or finger sticks, frequent bruising, mouth bleeding or other incidents. Lab tests would then be performed to determine if the child has hemophilia.
There are three levels of severity with hemophilia, which is affected by the levels of factor VII and factor IX. A person without hemophilia has levels at 100% with a range between 50% and 150%. The levels are as follows:
- Severe: A person with less than 1% circulating factor VIII or factor IX. This person can have spontaneous joint bleeding with no apparent cause. They can also bleed from any injury or dental or surgical procedure.
- Moderate: A person that has between 1% and 5% circulating factor VIII or factor IX. They typically do not have spontaneous joint bleeding, but they can bleed from any dental or surgical procedure.
- Mild: Similar to moderate, but a person that has greater than 5% circulating factor VIII or factor IX. No spontaneous joint bleeding but at risk during dental or surgical procedures.
To prevent the complications of hemophilia it is important to treat every bleeding episode promptly. Treatment involves the intravenous replacement of the missing factor. Your hematologist and nurse coordinator will discuss the treatment dosage that is appropriate for you or your child.
- RICE: Rest, Ice, Compression and Elevation. This is an important part of treatment for joint bleeding used in conjunction with factor replacement to reduce pain and swelling.
- On demand: This is given in response to a bleeding episode to stop the bleeding.
- Primary prophylaxis: Factor replacement is given two to three times per week for an indefinite period of time. It is designed to prevent joint bleeding and is usually begun before joint bleeds occur or after one or two episodes.
- Secondary prophylaxis: This treatment is in response to the development of a target joint problem or after a surgical procedure. Treatment is usually two to three times per week and may last from a few weeks to a few months.
Treatment & Evaluation:
- Bleeding disorders
- Children with thrombotic disorders
- Annual comprehensive hemophilia evaluation
- Genetic carrier testing
- Physical therapy
- Psychological support
- Ongoing medical management of bleeding disorders
- Home therapy coordination (including infusion teaching)
- Assistance accessing treatment products
- Referrals to providers and community services