How We Treat Hemophilia
Hemophilia and related disorders are chronic conditions that require medical intervention throughout the patient’s life. The approach of the HTC staff is to provide patient education and promote care at home. The philosophy of care of the HTC is to work with patients and families to fully participate in all aspects of their own self-care. Patient education and understanding of their disorder along with treatment are the keys to independence. Learning home treatment and managing ongoing care, with consultation from the HTC medical team for acute issues, are the ultimate goals for patients and families to become self-reliant. At the HTC our aim is to treat not just symptoms but assist our patients on multiple levels to help manage their disorders throughout their lives.
Education: Our HTC team members have many years of experience in the treatment of patients with bleeding disorders. The HTC provides detailed instruction to patients on the specific bleeding disorder a patient may have and teach methods to help patients prevent bleeds and reduce injury. Proper planning and knowledge assists our patients whether they are traveling, choosing a sport to participate in, or understanding how to be ready when a bleed occurs. Often this includes both planning and pre-medication to prevent bleeding.
Treatment: The clinical staff is up to date on all products used to treat bleeding disorders. A current factor products comparison sheet can be found on our pharmacy section HERE. Our HTC specialty pharmacy provides the all currently available medications used to treat bleeding disorders. Pharmacy products are available in the clinic setting for acute bleeding that requires an in-person visit and can also be shipped to our patients for use at home.
Physical Therapy: The goal of the HTC is to maximize every patient’s physical state with targeted exercise planning. However, when joint or muscle bleeds occur function can be limited. Our physical therapy team is skilled in helping patients overcome the painful side effects of joint and muscle bleeds and providing exercises for home therapy that will return patients to maximum health.
Counseling: Our two full-time social workers assist our patients in dealing with the psychological impact of dealing with a chronic condition. Their expertise in hemophilia and other bleeding disorders allows them to help patients manage the stresses and issues that may arise when living with their disorder. The social workers are also available to work with patients for insurance questions or other issues that affect overall quality of life.
Comprehensive Care Clinics: These clinics offer access to the full comprehensive care team including a hematologist, nurse practitioner, nurse, social worker, physical therapist, and pharmacist. The annual visit will consist of appointments with all HTC team members and a plan for the coming year as well as a blood draw for bleeding-related laboratory testing. These annual visits include:
- Reviewing issues that have come up with the patient that need addressing with the HTC care team.
- Addressing the individual treatment plan based on the patient’s current weight, bleed pattern, activity level and lab values.
- Working with patients to prepare a plan to manage acute bleeding episodes when they occur and how to contact us when they need immediate care. Our clinic is fully equipped and prepared to assist patients when faced with a bleed.
- Working with each family to identify which pharmacy the patient will use for both acute and ongoing treatment. Prescriptions will be provided to the patient following their visit.
- Educating patients on how to gain access to specific HTC staff for questions they may have.
- Informing patients on how to access our services after-hours.
- Assessing whether referrals to other specialty physicians are required.
See our Clinic page for details on how to set up an appointment for care.
Frequently Asked Questions About Hemophilia
(More in depth details can be found at nhlbi.gov or follow the links included)
What is Hemophilia?
Hemophilia is a genetic bleeding disorder that causes the blood to not clot normally. Hemophilia can cause a patient to bleed longer than others after an injury and internal bleeding can cause damage and pain to both internal organs and joints and muscles. Hemophilia can be life threatening and needs regular care to manage bleeds and prevent injury.
Though rare, hemophilia is far more common in males and occurs in approximately 1 in 5,000 males born each year. Girls can get hemophilia but it is very rare and can only happen if her mother and father are both carriers of the gene. There are varying levels of severity depending on much clotting factor is in the blood.
People with hemophilia are missing a protein that is usually found in the blood called factor. There are two main types of hemophilia. Type A is missing or has low levels of the clotting factor VIII (8). Type B is missing or has low levels of the clotting factor IX (9).
What causes Hemophilia?
Hemophilia is almost always inherited from the genes of a parent. Often a mother, who does not have any signs or symptoms of hemophilia, is a carrier of the gene that she inherited. If the gene is in a family it does not guarantee that a child will have hemophilia. See these example charts
created by the National Heart, Lung and Blood Institute on how the gene is passed on. Hemophilia cannot be passed on casually to a friend or stranger and causes no risk to those around anyone who carries the gene.
What are the signs and symptoms of Hemophilia?
The most common symptoms of hemophilia are excessive bleeding and easy bruising. The symptoms will vary, depending on how much factor is missing. Often children are not diagnosed unless they have excessive bleeding from an accident, surgery or procedures such as circumcision or dental work. Bleeding can occur externally (on the surface where you would see the blood), or internally (where blood may not be immediately evident.)
Signs of external bleeding may include such things as:
- Bleeding in the mouth when cut, bit or from cutting or losing teeth.
- Nosebleeds for no obvious reason.
- Heavy bleeding from a minor cut.
- Bleeding that resumes after stopping for a short time.
Signs of internal bleeding may include:
- Blood in the urine (this may occur when bleeding from kidneys or bladder)
- Blood in the stool (this may occur from bleeding in the intestines or stomach)
- Large bruises (from bleeding into the large muscles)
- Tightness, stiffness or swelling in a joint. Joints may become very painful to bend, hot to the touch and swelling may continue and pain can be severe (from bleeding in joints)
Bleeding in the brain is a serious complication and can occur after even a mild injury. Symptoms of bleeding in the brain are:
- Long lasting, painful headaches or neck pain and stiffness
- Repeated vomiting
- Sleepiness or changes in behavior
- Sudden weakness or clumsiness of arms or legs or problems walking
- Double vision
- Convulsions or seizures
If signs of hemophilia are present, please consult medical professionals as soon as possible to discuss testing and options for care.
How is Hemophilia Diagnosed?
If hemophilia is suspected, a visit to the doctor can begin testing for this condition. This will involve asking about personal and family histories, a physical exam and blood tests that can confirm the diagnosis. These blood tests will check the blood for the length of time it takes to clot, and whether clotting factor is either low or totally missing. Test results will tell what type and level of hemophilia a patient may have.
Can Hemophilia be cured?
No. At this time there is no current cure for hemophilia, however it is a condition that is treatable allowing patients with hemophilia to manage their disorder and live very normal lives.
How is Hemophilia Treated?
Depending on the level of severity and type of hemophilia, there are various methods for treating hemophilia. The most common is replacement therapy, which involves infusing the clotting factor that is missing into a vein. Replacement therapy can be done regularly as a preventative measure, and is commonly known as prophylactic therapy.
Some hemophiliacs only need treatment on an as-needed basis; this is often referred to as demand therapy. It is less intensive and less expensive than preventative therapy but there are higher risks because of damage that can occur from bleeding.
Injuries and problems from bleeding are also areas that need treatment, including physical therapy and medical care. Complications, including side effects of both factor replacement and medications and physical injury from bleeds can arise and should be monitored by a medical team that has experience with hemophilia. See more information on treatments, side effects, and complications here
What treatment is best for me or my family member?
The type of treatment and care that is best for each patient will depend on multiple factors. Among these are whether or not the patient has mild, moderate or severe hemophilia, what kinds of activities the patient participates in, and issues such as dental or other medical procedures needed.
Often, replacement therapy is not needed for mild hemophiliac patients, while moderate patients can manage the amount of replacement therapy dependent on careful planning of activities and procedures. Severe hemophiliacs will likely need replacement therapy to prevent major bleeding and damage to joins, muscles and other parts of the body. There are other methods
and a variety of ways of administering care and patients should discuss the best treatments and options for their situation with their HTC and primary care physician.
What kinds of actions and precautions do I need to take now?
Living with hemophilia
will take ongoing care and precautions but much is known and available for a long life of good health. One of the first things patients should do when learning of a hemophilia diagnosis is to visit a specialized Hemophilia and Thrombosis Center. These are federally funded centers that have a team of specialists to guide patients and families on a path to living healthy lives. Many of the more than 100 HTCs spread throughout the United States are attached to research and university medical centers.
Managing care can be as simple as maintaining good health, getting regular checkups, informing local doctors and others, such as a gym trainer, coach or dentists of a patient’s disorder and learning the signs and symptoms of bleeding.
Parents managing the care of a child with a hemophilia diagnosis should be aware of areas they can provide extra caution, preventative choices and managing care for their child. Patients and family members should discuss with their HTC on how best to manage these issues and other precautions that may be necessary to manage hemophilia patients.
Are there other bleeding disorders that are similar to Hemophilia?
Yes. While hemophilia is one of the most well-known, there are other bleeding disorders that act similarly. The most common, von Willebrand Disease, is actually more common and usually milder than hemophilia. It is the most common inherited bleeding disorder and affects both males and females equally. To find out more about von Willebrand Disease please go HERE.
HTCs manage the care of those with von Willebrand Disease and other bleeding and clotting disorders.
Where can I get help with my bleeding disorder?
The best place to get comprehensive care for a bleeding disorder such as hemophilia or von Willebrand Disease is a federally funded Hemophilia and Thrombosis Center. These centers are focused on life-long care for those with bleeding disorders and often specialize in new treatments, medications and pharmaceutical equipment to manage these conditions. Our clinic
is located in Aurora, Colorado
but for those outside the Denver metro area looking for a local HTC, please go HERE.