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About Hemophilia

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Contact us today to learn more about the Hemophilia Association of New York.

hemophilia 101Hemophilia is just one of many bleeding disorders that change the lives of the people living with them. Many people who have a bleeding disorder remain undiagnosed, just living with their symptoms. By learning more about hemophilia and other bleeding disorders, you can learn how to support those who live with them.

Where Is Hemophilia Treated?

Treatment for hemophilia and other bleeding disorders can be lifesaving. Since these conditions significantly increase the chance of complications after surgery or an accident, seeking preventative care helps to ensure bleeding can occur usually. Treatment most commonly occurs at one of two places:

At-Home Treatment

Treating hemophilia at home usually involves administering blood-clotting compounds directly into a person’s blood. These compounds work to replace proteins that are absent when someone is born with a bleeding disorder.

Hemophilia Treatment Center (HTC)

Medical centers specializing in treating bleeding disorders provide a patient with a team of physicians and support staff to help manage their condition. In addition to administering their medications, they can help to educate about their condition and provide therapy, so the patient can successfully keep their condition on track.

How Is Hemophilia Treated?

Bleeding disorders like hemophilia stem from the lack of proper blood compounds that help the body stop bleeding. These compounds, which are clotting proteins, stop internal and external bleeding. Although one of the most obvious risks of a bleeding disorder is the risk of uncontrolled bleeding after a cut, bruising and other internal bleeding can cause severe damage to the body.

Clotting proteins can be extracted through the blood or even genetically developed. Both methods have been used to develop effective treatments for people with bleeding disorders.

Plasma-Derived Treatment

When plasma is obtained from people with healthy blood, it is broken down into different parts for various treatments, including hemophilia treatment. After harvesting, skilled healthcare technicians will separate the blood into different components and sterilize them. The clotting proteins used for bleeding disorder treatment are isolated and treated before being packaged for use.

Genetically-Developed Treatment

Using DNA technology, scientists developed a way to effectively create clotting proteins for hemophilia treatment use without using blood from other people. This treatment, often called recombinant factor concentrate, cannot spread bloodborne illnesses but increase the chance of developing an inhibitor. Inhibitors prevent clotting treatment from working and further increase the possibility of a bleeding episode.

Non-Factor Replacement Therapies

Among the most groundbreaking treatments are non-factor replacement therapies. These treatments are administered under the skin and help to make up for missing clotting activity. Many experts hope non-factor treatments will help people who develop inhibitors respond to treatment and live a better life.

New treatments, like gene therapy, continue to improve the quality of care and life for people with hemophilia. By funding vital research, we can continue to prioritize safe, effective options for bleeding disorder treatment.

The Importance of Advocacy

Even though the bleeding disorder treatment can be highly effective and is constantly evolving, it may still be inaccessible to people who need it most. By fundraising and providing direct relief to those who need it, advocacy groups like the Hemophilia Association of New York and the New York State Bleeding Disorder Coalition make it possible for many to receive potentially life-saving treatment.

Other advocacy resources include:

  • Newsletter publication covering current treatments
  • Community education
  • Group retreats for people with bleeding disorders
  • Grants to healthcare scientists
  • Scholarships for families with hemophilia

New York State Bleeding Disorders Coalition Partner

Since 2009, the New York State Bleeding Disorder Coalition (NYSBDC) has organized advocacy groups for people with bleeding disorders. Health care and medical advancements are constantly changing, often becoming inaccessible to those who need them. Our partnership with the NYSDBC helps us reach more people and raise more vital awareness of the issues that could impact them. If you or a loved one have a bleeding disorder, contact us today at 212.682.5510 to access critical information and potential financial assistance regarding treatment.

Contact Us Today

If you would like to make a difference in the life of someone with a bleeding disorder, consider making a tax-deductible donation today. Likewise, if you or someone you love has a bleeding disorder, registering with the Hemophilia Association of New York