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.
- What is Von Willebrand’s Disease (VWD)?
- How common is Von Willebrand disease (VWD)?
- Does VWD affect only men?
- Do people with bleeding disorders bleed faster than people without bleeding disorders?
- Can people with bleeding disorders bleed to death from minor injuries?
- Should people with bleeding disorders avoid regular exercise or sports?
- VWD is a relatively common bleeding disorder in the general population, affecting males and females equally.
- Often patients with VWD present with excessive skin bruising, nose bleeding, heavy menstrual cycles and bleeding after surgical procedures or during labor/delivery/postpartum period.
- VWD is considered the most common inherited bleeding disorder worldwide, affecting up to an estimated 1% to 2% of the general population.
- Because the symptoms of VWD are often not recognized by patients or misinterpreted by physicians, VWD is thought to be significantly underdiagnosed in the population.
- VWD is not a sex-linked disorder and affects men and women equally.
- The symptoms of VWD are usually more obvious in women because of menstruation and labor/delivery.
- People with bleeding disorders do not bleed faster, they often bleed longer because their bodies are not able to form a stable blood clot.
- Because the clot they do form is unstable, they may experience re-bleeding.
- Minor bleeding is usually not life threatening in people with bleeding disorders.
- No. Exercise helps keep your body healthy. Healthy muscles and ligaments can prevent or reduce the risk of injury or joint damage.
- Being overweight places added stress on your joints.
- It is important to develop your exercise plan with the IHTC physical therapist to reduce the risk of injury – start slowly.
- Contact sports such as football or wrestling are not recommended.
- Set realistic goals and have fun!
HEMOPHILIA TREATMENT CENTER
- Why should I go to an HTC instead of a doctor in my community?
- Is the comprehensive care at a federally recognized hemophilia treatment center really more effective than care from other provider sources?
- Do I need to have a primary care doctor in my community?
- I talk to the treatment center all the time, so do I still 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 and VWD.
- An HTC has a multidisciplinary comprehensive care team including hematologists, nurse practitioners, physician assistants, nurses, social worker, career counselor, registered dietitian, genetic counselor, physical therapist, and dental hygienist.
- Studies have found that hemophilia patients treated at an HTC have better outcomes, fewer complications, less illness, and fewer deaths compared to hemophilia patients who are not treated at an HTC.
- Treatment through a federally recognized HTC has been shown to reduce complications and mortality for patients with bleeding disorders. The CDC documented a 40% decrease in mortality when patients were associated with their 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 decreased hospitalizations and complications, and increased independence and productivity.
- Please note that your primary doctor is still critically important to provide medical care for general medical issues.
- Your HTC works in close collaboration with your (or your child’s) primary care physician and provides medical advice as needed.
- The purpose of comprehensive care is to treat 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. It is similar to a yearly physical exam.
- You are not bothering us with questions that are related to your care!
- Waiting to call until a bleeding episode is advanced creates more issues for you and for us to help you with.
- 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.
SIGNS AND SYMPTOMS
- My grandmother, mother, and sisters all have very heavy periods that last for several days. They often cannot go to school or work on those days. Since this runs in the family, it’s probably normal and not something I need to ask my doctor about- right?
- My friend told me that my excessively heavy periods might be related to VWD, but when I asked my gynecologist, she said I cannot have a bleeding disorder because I’ve had two kids without complications or abnormal bleeding. What should I do?
My grandmother, mother, and sisters all have very heavy periods that last for several days. They often cannot go to school or work on those days. Since this runs in the family, it’s probably normal and not something I need to ask my doctor about- right?
- Wrong! Many women believe that long-lasting, heavy periods are normal, especially when other women in the family have the same symptoms, but such periods are not normal.
- Many physicians are not familiar with VWD and consider heavy menstrual bleeding to be a gynecologic rather than a hematologic problem.
- If you think you have abnormally heavy or long-lasting periods, ask your doctor about screening you for bleeding disorders, and specifically for VWD.
My friend told me that my excessively heavy periods might be related to VWD, but when I asked my gynecologist, she said I cannot have a bleeding disorder because I’ve had two kids without complications or abnormal bleeding. What should I do?
- Your body’s production of Von Willebrand Factor (VWF) changes depending on all sorts of conditions. Stressful situations, hormone levels during pregnancy, and the use of oral contraceptives increase the production of VWF 2 to 3 fold and reduce the chances of abnormal bleeding during periods, pregnancy (especially in later trimesters), and labor.
- Pregnant women with VWD often have less bleeding symptoms during pregnancy and delivery; but may experience bleeding problems after delivery when levels fall.
- Breast-feeding helps maintain a higher VWF level; therefore, breast feeding is encouraged not only for the health of the infant, but also for decreasing maternal risk of bleeding after delivery.
- If you think you have symptoms related to VWD, it is important to rule out the diagnosis. For more information about the symptoms of VWD and tips on talking to your doctor, visit Project Red Flag or call the IHTC at 1-877 256 8837.
- Why is it difficult to diagnose VWD Type 1?
- How do they make a diagnosis of VWD?
- In women with VWD, there is sometimes a significant delay in being diagnosed with VWD. Why is this?
- The bleeding symptoms of VWD are also common bleeding episodes experienced by many people, even those without VWD, and may not be considered unusual or abnormal. As a result, evaluation for a bleeding disorder is often delayed in people with VWD.
- The body’s ability to make Von Willebrand factor varies depending on various factors such as exercise, emotional stress and many other factors, so it is quite often difficult to diagnose VWD. Because of this, it is often necessary to repeat laboratory tests for VWD if they initially return as normal.
- The diagnosis of VWD should include a detailed history of bleeding in an individual, family history of bleeding, physical examination, and blood test results.
- The most common symptoms of VWD in women include easy bruising, nosebleeds, heavy periods, development of ovarian cysts, endometriosis and/or bleeding during the postpartum period. These symptoms are common in women in general and therefore are not considered as a “disease” state or abnormal. Diagnosis of VWD in these women may be delayed until they or their family members present with anemia or other complications due to bleeding.
- Is treatment always necessary in individuals with VWD?
- Can desmopressin be used to treat all types of VWD?
- 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?
- No, not all individuals with VWD need treatment.
- No, desmopressin is usually used to treat Type 1 and 2A VWD. It can sometimes be used in Type 2M and 2N.
- It is not effective in Type 3 VWD.
- Click here to download the IHTC’s fluid restriction guidelines and other information on DDAVP/Stimate use.
- VWD is not related to a vitamin K deficiency- you have enough vitamin K already so giving more will not help your body form a clot.
- Many supplements can be good for your body in some ways, but some can cause abnormal bleeding and complications in persons with bleeding disorders.
- The IHTC dietitian is available to answer your questions about dietary supplements.
- What do I need to consider when I go to the dentist?
- My child has VWD and needs to get a tooth extracted. What do I need to tell the dentist? What precautions should we take to reduce bleeding after the tooth extraction?
- Can I use tea bags to stop bleeding after dental work?
- The best treatment is prevention through good dental care including routine brushing, flossing and regular dental visits.
- Please consult the IHTC’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.
- It is important to consider the risk of bleeding before the dental procedure occurs.
- The IHTC has dental hygienists available to give your dentist all the information they need to treat your child with VWD.
- The dental hygienist can also give you personalized recommendations for reducing bleeding after the extraction.
- The IHTC physicians are available to prescribe medications you need to prevent or treat bleeding complications.
- The IHTC pharmacy specializes in bleeding disorder medications and can dispense medications you need to prevent or treat bleeding.
- For more information on dental care in people with a bleeding disorder, visit IHTC’s dental care page or call the IHTC at 1-877 256 8837.
- When a black tea bag is applied to a bleeding surface, the tannin in the tea causes a decrease in bleeding.
- Bleeding after dental work can be a significant problem in persons with bleeding disorders. If the tea bag does not help stop the bleeding, or if the bleeding is heavy, it is important to call your dentist or the IHTC.
- You can call the IHTC at 1-877 256 8837 if bleeding continues.