This section contains responses to FAQs from individuals living with an inheritable bleeding disorder or for those who have experienced symptoms and suspect they might have one. Explore this page to learn more about the more common inherited bleeding disorders. Be sure to visit us again as we continue to provide additional answers to FAQs!
Symptoms associated with a bleeding disorder vary from relatively mild (nose bleeds, excessive bruising) to more severe (chronic joint bleeding, menorrhagia), and to life threatening (intracranial, GI bleeds). Bleeding can be triggered by an event such as an injury or can occur spontaneously with no apparent cause.
The type of bleeding disorder will also determine, in part, what symptoms an affected individual will experience.
If you are unsure whether your symptoms are consistent with an underlying bleeding disorder, then you should schedule an appointment at a hemophilia treatment center (HTC). An HTC is a specialized health center dedicated to caring for individuals with inheritable bleeding disorders.
HTCs are part of a federally funded national network and are therefore located across the U.S. They are uniquely structured to provide comprehensive or “integrated” health care, each with a core team consisting of a hematologist, nurse, physical therapist, and social worker. To locate an HTC nearest you, please send an email to firstname.lastname@example.org, call 1.800.424.2634 on Mondays to Fridays from 9am-5pm EST, or search the HTC Directory.
Receiving an initial diagnosis with a bleeding disorder can be an unsettling and nerve-racking time. We have information on several commonly inherited bleeding disorders, including explanations of inheritance, symptoms, diagnostic tests, and treatments available for your specific condition.
NHF produces a broad range of educational publications for individuals living with bleeding disorders, their family members, and the public. View a full list of currently available publications.
NHF has developed a comprehensive website targeted to parents of young children and teens as well as adults living with bleeding disorders at distinct stages of life. On the Steps for Living web page, you will find information categorized from birth to school-aged children, from adult to ‘older-aged’ adult, along with specific resources, guidelines, and many other topical factsheets.
NHF also has an extensive YouTube page, where we have amassed a collection of educational webinars, recorded conference sessions, public service announcements (PSAs), and community profiles. We encourage you to subscribe or hit “like” on our page to receive the latest videos in your own YouTube feed.
Individuals with specific questions and medical concerns over their own health situation related to COVID-19 should contact their hemophilia treatment center (HTC), hematologist, or primary care physician.
On our website, there is a “Frequently Asked Questions” webpage written specifically for individuals with bleeding disorders. These pages are updated as new information continues to emerge and/or once FDA and CDC guidance or approvals are made public.
For people living outside the US with questions related to COVID-19, we would encourage them to check the World Federation of Hemophilia website for additional guidance and information on other vaccines.
Yes. They can be diagnosed with hemophilia, even though it is a rare occurrence. A percentage of female ‘carriers’ of the hemophilia gene can be symptomatic and can experience bleeding too. They can also be diagnosed with von Willebrand disease and several other rare disorders with bleeding symptoms that can range from mild to severe.
If you have symptoms consistent with a bleeding disorder, consider visiting NHF’s Better You Know, which includes a risk assessment, tools, and other information to learn whether you are at risk for a bleeding disorder and the next steps you can take to obtain additional testing and care.
If you have already received a diagnosis, consider exploring NHF’s Victory for Women initiative, which creates resources and provides support and education for all women and girls in the bleeding disorders community.
Visit our Other Factor Deficiencies page to learn the basics of rare bleeding disorders and to access educational opportunities, including the Rare Bleeding Disorders Education Series.
NHF has also created several educational resources focused on rare bleeding disorders. Go to our publications listing to access booklets on conditions such as factor VII deficiency, Glanzmann’s Thrombasthenia, and factor XIII deficiency.
You can also learn more about a few of the more common inherited platelet disorders here.
To find your nearest HTC or the contact info for a hematologist specializing in bleeding disorders, you can search the CDC Hemophilia Treatment Center Directory.
If you are searching for a treatment center in another country, we suggest accessing the World Federation of Hemophilia’s Global Treatment Centre Directory.
Prior to engaging in any physical activity, you should speak with your HTC care team, particularly your HTC physical therapist, for guidance. This is especially important if you have not been active for some time.
NHF has an excellent publication called Playing it Safe - Bleeding Disorders, Sports and Exercise which discusses how individuals with bleeding disorders can safely participate in exercise and sports activities. It is available for immediate download and available in Spanish- Jugando a lo Seguro. Access those publications here.
There is a “Sports Ratings by Activity” document, which rates the risk levels of many activities, ranging from basketball to mountain biking.
Since inherited bleeding disorders are lifelong chronic conditions, it is extremely important to educate yourself on how medical costs are billed and how your particular insurance plan reimburses for medical visits, tests, and the high cost of product. Here is a great place to start or continue your learning process.
Whether you are choosing an insurance plan through your employer, the “marketplace”, or considering a managed care plan, you still need to carefully consider what the plan offers, including how much you will pay, the size of the network, and prescription coverage. NHF has developed a “Personal Health Insurance Took kit” resource to help individuals better understand their individual/family coverage needs and their product costs. It contains worksheets, a glossary of terms, and links to available resources.
Policies related to insurance coverage and reimbursement can change from year to year. Changes can stem from a change in your insurer or provider in your own plan. New legislation at the state level can cause changes too. It is important to stay abreast of these changes; you can do so by checking NHF’s newsroom or public policy section for updates.
It is strongly advised to consult a hematologist prior to surgery and have them consult with your surgical team. At the very least, one should ensure that their surgeon has connected with their hematologist or primary care physician in advance.
While most surgeries are very serious procedures for people with moderate and severe bleeding disorders, some require a higher degree of preparation such as cardiac surgeries, liver or other organ transplants, or major obstetric procedures. NHF’s Medical and Scientific Advisory Council has approved certain recommendations related to treatment of hemophilia and other inheritable bleeding disorders. View the list of documents.
NHF benefits from a robust network of state and local chapters working to improve the lives of people with bleeding disorders. Chapter organizations offer many ways for individuals and families to connect with each other, provide support, advocate for legislative changes, participate in summer camps and other social events. To find a chapter near you, please click here.
If there is not a chapter listed in your state, call 1.800.424.2634.for guidance or contact a neighboring state chapter for more information.
NHF maintains an ‘Events’ page where you can find notices of upcoming educational conferences, virtual events, webinars, and local chapter events. NHF has a Twitter and Facebook ‘meta’ page that you can follow too.
Each year, NHF holds a Bleeding Disorders Conference in which about 2,700 members of the community converge to hear the latest education, connect with healthcare providers and network with stakeholders. In 2022, NHF's BDC will be be held in Houston, Texas from August 25th-28th. Learn more & register here.
Yes! As a person living with, or caring for, someone with a bleeding disorder, it is important to consider well in advance what resources might be needed in crises and emergencies. You may not always have time to call or speak with your local HTC, and many advise folks experiencing a serious emergency to call 911 directly. All HTCs have phone numbers for day and after-hours contact. We recommend saving these phone numbers and keeping a copy of your insurance ID card. There are additional resources specific to individuals/families affected by bleeding disorders and ‘emergency’ care listed here below.
NHF’s MASAC document #227 discusses home factor supply for emergency preparedness for patients with hemophilia and other bleeding disorders. Our MASAC document #257 discusses current guidelines for emergency management of individuals with hemophilia and other bleeding disorders.
For more information about securing the proper medical identification that is critical in medical emergency situations, contact the MedicAlert Foundation.