The Power of Your Choice
Your choice of the IHTC Pharmacy Program directly supports your IHTC team and patient services, and activities provided to the hemophilia community. The IHTC Pharmacy Program provides savings to you and your health insurance plan.
Every patient has the right to choose their clotting factor pharmacy provider. The IHTC supports your right of choice and will assist you in making an informed decision.
- How common is hemophilia?
- Is hemophilia more common in any specific race?
- Do people with bleeding disorders bleed faster than people without bleeding disorders?
- Can people with bleeding disorders bleed to death from cuts and scrapes?
- Should people with bleeding disorders avoid regular exercise or sports?
- People in my daycare/school are very nervous about taking care of my son. What should I do?
- Hemophilia is considered a rare disease. It is estimated that 20,000 people in the United States have hemophilia.
- Hemophilia A affects between 1 in 5,000 and 1 in 10,000 males.
- Hemophilia B affects 1 in 40,000 to 50,000 males.
- Hemophilia affects all racial and ethnic groups equally.
- People with bleeding disorders do not bleed faster but they often bleed longer because they are not able to form a stable blood clot due to the deficiency of a clotting protein.
- No, minor bleeding is usually not life threatening even in people with hemophilia.
- Injuries in the mouth can cause severe anemia due to persistent blood loss.
- No, exercise helps keep your body healthy. Healthy muscles and ligaments can prevent or reduce the risk of injury or joint bleeding.
- Being overweight places added stress on your joints, which may contribute to joint bleeding and damage.
- It is important to develop your exercise plan with the IHTC physical therapist to reduce the risk of injury.
- Start slowly, set realistic goals, and have fun!
- It is not unusual for daycare/school staff to feel nervous about taking care of a child with a bleeding disorder. What they need is an understanding of the bleeding disorder and education about how to take care of a child with a bleeding disorder.
- The IHTC has a nurse and career counselor who are trained to provide education and support to daycare staff, schools, and employers.
HEMOPHILIA TREATMENT CENTER (HTC)
- Why should I go to an HTC instead of a doctor in my community for the management of my hemophilia?
- Do I need to have a primary care doctor in my community?
- I talk to the treatment center all the time, so do I need to be seen in comprehensive clinic?
- I do not want to bother the treatment center- should I still call if I have a question or concern?
- A hemophilia treatment center (HTC) is dedicated to the diagnosis, treatment, and management of bleeding disorders such as hemophilia.
- An HTC has a multidisciplinary comprehensive care team including hematologists, nurse practitioners, physician assistants, nurses, social worker, career counselor, genetic counselor, registered dietitian, and dental hygienist.
- Treatment through a federally recognized HTC has been shown to reduce illness and risk of death for patients with bleeding disorders.
- A CDC study found a 40% reduction in deaths when patients were treated at a federally recognized HTC, compared to treatment provided through all other sources, including non-federally recognized medical facilities and centers.
- Treatment at a federally recognized HTC is also associated with reduced hospitalizations and complications, and increased independence and productivity.
- Please note that your primary doctor is still critically important to provide medical care for routine medical issues.
- Your HTC works in close collaboration with your (or your child’s) primary care physician and provide necessary medical advice as needed.
- The purpose of comprehensive care is to assess the whole person and the family through evaluation of all the medical and psychosocial aspects of bleeding disorders.
- The comprehensive care team includes many different disciplines that you likely have not talked to throughout the year.
- A comprehensive clinic visit gives the HTC medical team an opportunity to focus on the person with a bleeding disorder when he or she is not having an urgent problem.
- You are not bothering us with questions that are related to your care!
- Waiting to call until a bleeding episode is advanced creates more work for you and for us.
- We have a doctor on-call 24 hours a day, 7 days a week, 365 days a year.
- Call the IHTC at 1-877 256 8837.
- My child is 6 months old and bruises easily. Is there a chance he could have hemophilia?
- My child was just diagnosed with hemophilia. What do I do now?
- What should I tell my family and friends about the hemophilia diagnosis?
- What is a PT or an aPTT?
- Is the aPTT always prolonged in someone with hemophilia?
- In patients with hemophilia, is intracranial hemorrhage (bleeding in the head) always associated with a visible hematoma (bruise) on the scalp or head?
- Yes. Not all people with hemophilia are diagnosed at birth. Even children with severe hemophilia may not bleed at birth or with circumcision. In some cases, a child with severe hemophilia is not diagnosed until up to 1 year of age.
- Sometimes people with moderate or mild hemophilia or individuals who do not bleed frequently may not be diagnosed until they are adolescents or adults.
- Don’t panic. Hemophilia is a manageable condition and there are lots of excellent resources to help you.
- Contact the National Hemophilia Foundation (NHF) at www.hemophilia.org to find the nearest Hemophilia Treatment Center (HTC). These centers are part of a national network of clinics specifically focused on bleeding disorders.
- Your state may also have a local chapter of the NHF that may be helpful. If you are an Indiana resident, the local NHF chapter is:
Hemophilia of Indiana, Inc.
5170 E. 65th St.
Indianapolis, IN 46220
- When you meet with your HTC, you will receive information and resources to educate not only you, but also family and community members at school, work, and places of worship.
- The PT (prothrombin time) and aPTT (activated partial thromboplastin time) are very common laboratory tests that evaluate how well your blood is clotting. If either test is prolonged, you may be missing a clotting protein.
- In people who are missing only a small amount of clotting protein, such as in mild hemophilia, your aPTT may not be prolonged.
- The sensitivity of each laboratory in detecting moderate deficiencies may vary. Remember that the PT and aPTT indicate ability of the blood to clot. To establish a diagnosis of hemophilia, your clinician needs to check the actual factor VIII or IX activity.
- The aPTT may not be prolonged in mild factor IX or VIII deficiency.
- The sensitivity of each laboratory in detecting moderate deficiencies may vary; therefore, the aPTT should not be used as a screening test in patients with a suspicious clinical history.
- The aPTT is relatively insensitive in patients with Von Willebrand disease; it is often normal in this disorder and should not be used as a screening test.
- Rare bleeding disorders exist in which the PT and aPTT are expected to be normal; consultation with the IHTC is available to discuss diagnostic issues and problems in persons who are bleeding despite normal coagulation values.
- Intracranial hemorrhage remains an important cause of significant disability and death in patients with bleeding disorders. To detect these types of bleeding episodes, clinicians should be aware of this problem and should use an aggressive treatment approach when evaluating the patient. Anyone with symptoms should be evaluated immediately by a medical provider!
- A CT scan continues to be the gold standard in evaluation of head trauma in a person with a bleeding disorder.
- Intracranial hemorrhage may occur without loss of consciousness and without development of a visible bruise or hematoma, and may occur with or without a report of injury.
- Symptoms of intracranial hemorrhage may evolve over time and take several days to emerge; therefore a neurological assessment at the time of injury may not be sufficient to diagnose an intracranial hemorrhage. Even if a CT scan was normal at the time of injury, continue to monitor the patient and call if he develops symptoms of concern.
- My son is the first person in my family who has hemophilia. How did this happen?
- I am a female carrier of hemophilia. Who in my family is at risk for having hemophilia?
- My father had hemophilia. What are the risks for my children?
- My father has hemophilia so I know all about the disorder. Do I still need an education session when I am pregnant?
- Do all patients with hemophilia have a family history of the disorder?
- I am a carrier of hemophilia and currently pregnant. What should I do?
- I am currently pregnant and have a family history of hemophilia. Do I need to be worried?
- 30% of newly diagnosed patients do not have a known family history of a bleeding disorder.
- You should talk to your family to get a detailed history of any members who have abnormal bruising or other bleeding symptoms.
- Sometimes mild bleeding disorders go undiagnosed, so you may have a family history of mild bleeding that you didn’t know about. You need to ask specific questions.
- A female carrier of hemophilia can pass on an affected X chromosome to her son or daughter. Thus there is a 50% chance that each son or daughter will inherit the affected X chromosome from their mother.
- If a male child inherits his mother’s affected X chromosome, he will have hemophilia, but if he inherits the normal X chromosome he will not have hemophilia.
- If a female child inherits her mother’s affected X chromosome, she will be a carrier.
- Thus, there is a 50% chance that the daughter of a carrier mother will also be a carrier of hemophilia.
- There is a 50% chance that the son of a carrier mother will have hemophilia.
- If you are a man and your father had hemophilia, none of your children will be affected.
- If you are a woman and your father had hemophilia, you are always a carrier. This means each of your sons will have a 50% chance of having hemophilia and each of your daughters will have a 50% chance of carrying hemophilia.
- Yes, it is important for all hemophilia carriers to have education sessions with the HTC.
- You will want to hear about the medical advances that have occurred in the care of individuals with bleeding disorders in the past several years.
- You will want to learn about being the parent of a child with hemophilia, which has different responsibilities than being the daughter of a parent with hemophilia.
- An education session is an opportunity for you to know the HTC staff before your child with hemophilia becomes a patient of the center.
- No. Up to 30% of individuals with hemophilia have spontaneous genetic alterations that cause hemophilia. This means there is no evidence that these individuals inherited the genetic alteration from a family member and there is no known family history of hemophilia.
- There is a 50% chance that a male child will have hemophilia and a 50% chance that a female child will be a carrier.
- The important thing is to be prepared at the birth of your child. People often use ultrasound to determine if the child is a male. There are also other tests such as amniocentesis that can determine your child’s risk.
- Your male child can be diagnosed at birth through cord blood testing.
- In women who are or may be carriers of hemophilia, difficult delivery (notably, prolonged second stage of labor, use of forceps, vacuum extraction) should be avoided.
- If you are pregnant and a hemophilia carrier, it is important to have a relationship with your local HTC before your child is born.
- How closely you are related to the individual(s) with hemophilia will determine your child’s risk of being affected.
- Contact the HTC, where a geneticist will be able to educate you about your child’s risk for inheriting hemophilia.
- How often will I need treatment to manage my hemophilia?
- What medications are used to treat hemophilia?
- If I do not have bleeding episodes for a long period, can I stop my prophylactic treatment?
- If I get a bleed, should I try ice first, then infuse if the ice does not help?
- What do I need to consider when I go to the dentist?
- Can I use tea bags to stop bleeding after dental work?
- Can my child get routine immunizations? Do I need to take any special precautions?
- Should I take extra vitamin K to help my blood clot?
- Should I take garlic supplements and fish oil supplements to keep my heart healthy?
- Most individuals with hemophilia are treated with infusion of factor concentrates to prevent or treat the bleeding episodes.
- In general, there are two types of treatment methods for these patients: episodic (“on-demand”) treatment and prophylactic treatment.
- With on-demand therapy, a person uses factor replacement therapy to treat a bleed, but does not use the factor replacement therapy on a regular basis to prevent bleeding episodes.
- With prophylactic treatment, a person uses factor replacement therapy on a regular schedule such as 2 or 3 times per week even if they are not bleeding.
- The goal of prophylactic treatment is to prevent bleeds and joint damage before they occur.
- In North America, most children with severe hemophilia are treated with prophylactic therapy.
- Clotting factor concentrates
- Aminocaproic acid (Amicar)
- Desmopressin acetate (Stimate) Click here to download the IHTC’s fluid restriction guidelines and other information on DDAVP/Stimate use.
- The purpose of prophylactic treatment is to prevent bleeding episodes, so if you follow your prophylactic schedule and do not have bleeding episodes, this most likely shows that your prophylaxis has been effective and should be continued.
- The IHTC recommends that you discuss any changes in your treatment with your hematologist. We are happy to help patients find a treatment schedule that works for them, so if you want to change your treatment, just give us a call and we will discuss different options with you.
- To effectively treat hemophilia-related joint or muscle bleeding, you must first infuse clotting factor concentrate.
- Rest, Ice, Compression, and Elevation (RICE) are supportive components of treating your bleeding but should not be used as a replacement to infusion of factor concentrate.
- Read more about RICE in the Summer 2008 issue of IHTC’s newsletter, The Clotting Times.
- The best treatment is prevention through good dental care, including routine brushing and flossing and regular dental visits.
- Please consult the HTC’s dental hygienists before any dental work is performed. They will develop a plan with your dentist so you can safely undergo whatever procedure is necessary.
- If there is prolonged bleeding after dental work, call your dentist or the HTC.
- For more information about dental care, visit IHTC’s webpage on dental care and the Summer 2008 issue of IHTC’s newsletter, The Clotting Times.
- When bags of black tea are applied to a bleeding surface, the tannin in tea causes a decrease in bleeding.
- However, bleeding after dental work can be a significant problem in persons with bleeding disorders. If a tea bag does not stop the bleeding, or if the bleeding is heavy, it is important to call your dentist or the IHTC.
- Please call the IHTC at 1-877 256 8837 if the bleeding continues.
- Your child should get regular immunizations with necessary precautions to prevent bleeding from the injection sites.
- We recommend that the immunizations should be given in the thigh or other large muscle groups using the smallest gauge needle.
- No more than one immunization should be given in one muscle group per visit.
- Use ice and pressure after immunizations.
- Immunizations may be given subcutaneously (under the skin).
- Hemophilia is not related to a vitamin K deficiency- you have enough vitamin K already so giving you more vitamin K will not help your body to form a blood clot.
- Many supplements can be good for your body in some ways but can cause abnormal bleeding and complications in persons with bleeding disorders.
- The IHTC dietitian is available to answer your questions about dietary supplements.
- What is an inhibitor and how does it affect my treatment?
- Does the brand of factor replacement affect the chances of developing an inhibitor?
- In some people who receive factor replacement products, the body recognizes the factor product as a foreign substance and produces antibodies against it, just as if the product was a dangerous foreign protein in the bloodstream.
- The body’s immune system attacks the factor product so that it can no longer work, meaning that the regular dose of factor concentrate is ineffective to treat a bleed in that patient.
- Bleeding episodes in a person with an inhibitor are challenging to treat and require the expertise of an HTC.
- At this time, the cause of inhibitors is not fully understood but continues to be investigated.
- To date, the brand of the factor replacement has not been shown to affect the chances of getting an inhibitor.