The Long Island Jewish Hemostasis and Thrombosis Center, previously known as the Long Island Jewish Hemophilia Treatment Program, started in 1973 for children and adults with hemophilia and bleeding disorders. We also see children with clotting disorders.
Our program, part of Cohen Children’s, is an effective model for a seamless transition to adult life with both pediatric and adult caregivers. It operates as a “medical home” for patients and families with bleeding disorders. Our center provides expert team-based health care and is composed of physicians, nurse practitioners, nurses, social workers, physical therapists, and genetic counselors with expertise in the diagnosis and management of bleeding and clotting disorders.
- Accurately diagnose hemophilia and other bleeding and clotting disorders through multidisciplinary team participation, providing patients with personalized and coordinated care with primary care providers, hematologists and other medical specialists
- Educate patients and families with diagnosed bleeding and clotting disorders and provide appropriate genetic counseling to patients and carriers at risk
- Offer psychosocial counseling as needed
- Offer opportunities to participate in institutional, regional, national and international research studies and clinical trials, which have significantly advanced the care we provide
About hemophilia and inherited bleeding disorders
Inherited bleeding disorders such as hemophilia are rare and predominantly affect males. They occur when one of several blood clotting proteins normally found in the blood is either deficient or defective. As a result, patients may experience internal bleeding into the joints and tissues, resulting in severe pain, swelling and permanent joint and muscle damage.
Von Willebrand’s disease (VWD) is the most common bleeding disorder. It is caused by a deficiency or defect in the von Willebrand protein, which plays a major role in initiating the early steps of clotting. It can affect both males and females. Individuals with this disorder typically bruise easily, have frequent nosebleeds, and may experience heavy and prolonged bleeding after tooth extraction, tonsillectomy or surgery. Girls and women with VWD can experience prolonged menstrual bleeding, leading to a compromise in their health and quality of life.
Thrombophilic disorders are a class of inherited conditions that increase the tendency for blood clots and strokes. These thrombophilic disorders are often thought of as the opposite of hemophilia due to the increased propensity for clotting. Thrombophilia affects males and females equally.
Who should be seen and referred?
- Patients with a known bleeding disorder or known family history of the same
- Patients with a family history of hemophilia or rare bleeding disorder who want to be screened for carrier status
- Patients with known personal or family history of clotting disorders, to identify an inherited risk factor for clotting problems
- Patients with known family history of a bleeding or clotting disorder prior to a procedure, to reduce potential complications of bleeding or clotting during and after the procedure
Who is considered to have a bleeding or clotting disorder?
- An individual with a family history of known hemophilia or other bleeding disorders
- An individual who has had a procedure and suffered prolonged bleeding after, not related to the procedure itself, and who may have required an unanticipated blood transfusion
- Teenage girls and women with a history of heavy menses resulting in significant anemia, requiring iron therapy and/or a blood transfusion
- Individuals who develop unusual bruising, either spontaneously or after consumption of over-the-counter anti-inflammatory medications such as aspirin and ibuprofen-containing products
- Individuals who are unusually flexible and develop spontaneous easy bruising or prolonged bleeding after procedures
- Individuals with a personal or family history of blood clots, heart attacks, recurrent miscarriages and strokes, prior to a procedure
What happens at the first and subsequent visits?
Soon after you make an appointment for you or your child, we will ask you to send us any personal records for review. We will perform a detailed history, physical exam and blood draw to confirm a known diagnosis or identify a new diagnosis. After we have the results, you will receive a call to come in to discuss them.
A letter will be sent to your primary care physician or pediatrician and other subspecialists involved in your or your child’s care after this discussion. This will be followed by a comprehensive visit with the team to enable you to better understand and address the bleeding or clotting problems. You or your child will then have follow-ups on a biannual or annual basis, depending on the diagnosis and complications associated with the diagnosis.
Our multidisciplinary team coordinates with a wide array of specialists to ensure you and/or your child receives comprehensive care tailored to your needs, including:
- Ear, nose and throat specialists
- Other specialists based on individual needs