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What is a bleeding disorder?A bleeding disorder is a general medical term to describe difficulties with bleeding. Such disorders carry with them significant medical risks. Bleeding disorders can be inherited (congenital) or arise as the result of a medical problem or other event. More information can be found by clicking here. Here are some symptoms of bleeding disorders: •* Regular bleeding from the mouth or gums * Frequent nosebleeds or nosebleeds that last a long time * Easy bruising * Excessive bleeding after injury or surgery * Bleeding from small cuts for a long time * Unexplained heavy bleeding after giving birth * Excessive menstrual bleeding: •Soaking through 1 or more pads or tampons every hour for several hours in a row Need to use double sanitary protection to control your menstrual flow Need to change sanitary protection during the night Menstrual periods lasting longer than 7 days Large blood clots Periods that interfere with your regular lifestyle Constant pain in your lower abdomen during periods Tiredness or shortness of breath (symptoms of anemia) How common are bleeding disorders?Bleeding disorders affect approximately 3% of the general population in the US. Why is community awareness of bleeding disorders needed?A recent survey of women's general awareness of bleeding disorders revealed a startling lack of knowledge. Lack of awareness means people go undiagnosed and untreated, which is potentially dangerous. What should I do if I think I may have a bleeding disorder?Visit your family physician and discuss your concerns. He or she may decide to do tests or to refer you to a hematologist, a physician who specializes in bleeding disorders. Where can I get diagnosed and treated?Unfortunately, because bleeding disorders are rare, appropriate diagnostic testing is not normally available at a doctor's office or regular hospital. You should not wait until you have a medical emergency to get tested. Hospital Emergency Departments cannot do diagnostic testing, and they may not be able to save you from life-threatening blood volume loss if they do not know your specific diagnosis and plan of care. In fact, every hospital does not necessarily stock all the medicines needed to treat all types of bleeding disorders. HTCs have comprehensive care not normally available at a doctor's office. This includes social work services, physical therapy, orthopedics, etc. Because they treat more people with bleeding disorders than other healthcare professionals, staff at hospitals affiliated with HTCs tend to be more familiar with these disorders, and their pharmacies are more likely to stock the medicines you need. They also have access to your medical record, so they can review your treatment history to make the best decision on how to care for you in an emergency. In New York State, there is one HTC in each of the following locations: Albany, Buffalo, Johnson City, New Hyde Park, New York City, Rochester, and Syracuse. Click here to find the HTC closest to you. After you get a diagnosis, ask the physician to explain what type of care and medicine you will need, what to do and where to go in emergencies, how to prevent complications of bleeds, and how to know if you are dangerously anemic or have lost a dangerous amount of blood. What should I do if I've just been diagnosed with a bleeding disorder?First, learn as much as you can about your specific disorder from your physician, including symptoms, when to seek medical attention, treatment options, and first aid techniques. Visit our resources page for further information. Be sure to find a knowledgeable physician and see him or her as often as is recommended for you (usually about once a year). Join our local chapter to help advocacy and support efforts. At some time in the future, we hope to offer a program to match newly diagnosed persons with persons who were diagnosed in the past and are willing to support and assist others.
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