2022 Self Advocacy, Independence & Leadership Teen program © Courtesy of Hemophilia Association of New York
Since 1952, the Hemophilia Association of New York (HANY) has been striving to improve the quality of life for those with bleeding disorders, such as hemophilia, through direct assistance, education, and advocacy. But what is hemophilia?
Hemophilia is a bleeding disorder that makes it difficult for a person’s blood to clot, sometimes even with minor injury. Depending on where in the body bleeding occurs, it can cause long-term injury, complications or disability.
Most bleeding disorders can be traced back genetically—many parents find out their child has a bleeding disorder when there is unceasing bleeding during circumcision, or extreme bruising after a vaccine.
At HANY, it’s our mission to provide information and connections to medical treatment for families. With educational resources, we work to advocate for proper medical treatment and research.
Symptoms of Hemophilia and other bleeding disorders:
- Frequent nosebleeds
- Blood in the urine or stool
- Heavy menstrual bleeding
- Easy bruising
- Prolonged bleeding from an injury or with surgery
- Painful bleeding into muscles and joints
- Bleeding during and after pregnancy
- Intracranial bleeding
A bleeding disorder requires lifelong treatment—untreated or undertreated bleeding disorders can result in a loss of function of muscles and joints, arthritis, brain bleeds, organ dysfunction, traumatic brain injury, and even death. Thanks to research and advocacy, many of the complications can now be mitigated, although not avoided entirely, for hemophilia and some of the other inherited disorders by preventative treatment with clotting factor, beginning in the very young child. These regimens can still be burdensome on the patients and families however, as most clotting factor therapies are still administered intravenously.
However, newer types of non-factor treatments are beginning to make this easier and research on curative gene therapies are ongoing. Nonetheless, living with these disorders remains difficult for those affected and their families. Community support, advocacy, education and research all remain critical to their unencumbered futures.
About the Hemophilia Association of New York
HANY is a small non-profit organization that has served the bleeding disorders community of Downstate New York since 1952. HANY has been critical in taking care of the unmet needs of the community. We provide advocacy, education and direct assistance through our emergency assistance, transportation to medical appointments, Medic Alert, and Co-pay and Deductible assistance programs. Our mission also includes the support of research that seeks to find cures and better treatments for those with bleeding disorders.
Our clients number close to 800 and though many have Hemophilia A (Factor 8 deficiency) and Hemophilia B (Factor 9 deficiency) there are many with rare and ultra-rare bleeding/ coagulation disorders, as well as von Willebrand Disease and platelet disorders.
Our education programs include peer group meetings on various pertinent issues affecting those with bleeding disorders. Our 2022 Events include: Self Advocacy Independence and Leadership (S.A.I.L), our Teen Retreat, our Blood Brotherhood Conference, a Women and Girls Conference, and our Steven L. Margolies, M.D. Family Educational Conference. Additionally, we have hosted A Symposium for No 1, a national program for those affected by the rare condition Afibrinogenemia.
Medical Professionals also avail themselves of our education programs. Hematology & Pregnancy; Problems & Issues has been offered annually with a focus on complications of pregnancy involving blood disorders.
The Hemophilia Association of NY will continue its service to the hemophilia and bleeding disorders community, especially with the support of our donors. Learn more and donate at hemophiliany.com
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