Medical Info

  What is a Bleeding Disorder?

There are numerous bleeding disorders.

The most common ones are hemophilia and von Willebrand Disease.

Hemophilia is an inherited bleeding disorder caused by a deficiency or defect of one of the proteins necessary for blood to properly clot. These proteins are known as clotting factors. The type and severity of a person’s hemophilia depends on which protein is involved and to what degree they are deficient. The most common forms are hemophilia A (classic hemophilia), a deficiency of Factor VIII and hemophilia B (Christmas Disease), a deficiency of Factor IX. Hemophiliacs do not bleed to death from minor cuts or injuries, nor do they bleed faster; they bleed longer because their blood cannot form a firm clot. Often, bleeding is internal, into joints, and results in arthritis. Hemophilia affects mostly males.

Von Willebrand Disease is a hereditary bleeding disorder characterized by bleeding from mucous membranes (i.e. mouth, nose, throat, gastrointestinal tract) and skin surfaces. Excessive bruising, nose bleeds, heavy menstrual cycles (menorrhagia) and excessive bleeding following extraction of teeth or tonsils are the most common symptoms of von Willebrand Disease. Since it is a hereditary disorder, family history is usually positive for a bleeding tendency in other family members. Von Willebrand Disease differs from hemophilia in that it affects both males and females. It is the most common inherited bleeding disorder. About 1% to 3% of the population is affected.

Always consulting with your healthcare provider about specific healthcare decisions.

Management of von Willebrand Disease

To read the vWD Guidelines in full click here

Free Materials on Hemophilia

Better You Know – Betteryouknow.org is a website for women and men who may experience symptoms of a bleeding disorder but have not been diagnosed. With this site, the National Bleeding Disorders Foundation (NBDF) hopes to raise awareness and knowledge of bleeding disorders as part of our Better You Know campaign.

Click here for online education

Treatment

Replacing the deficient clotting factor treats hemophilia. This is done via infusions of plasma derived factor concentrates, further purified by monoclonal antibody procedures or artificially produced through recombinant DNA technology. Many patients are on a home infusion program whereby they self-infuse the clotting factor concentrate when they bleed. This ensures prompt treatment and gives them greater independence. The cost of treating severe hemophilia can run as high as $250,000 per year.

Click here for a list of Products Licensed in the U.S. to treat Bleeding Disorders

Complications

The most common clinical complication of hemophilia is damage to the joints that can occur when there is bleeding into the joints. Bleeding into the knees, elbows, ankles, shoulders, and hips can lead to chronic swelling and later deformity.

People with hemophilia are treated with blood products derived from thousands of donors. For this reason they are at risk of being exposed to viruses.

Hepatitis viruses were often transmitted in blood products used by persons with hemophilia. These hepatitis viruses caused problems from mild chronic infections to liver failure.

The contamination of the nation’s blood supply with HIV (Human Immunodeficiency Virus) that causes AIDS (Acquired Immune Deficiency Syndrome) in the early 1980’s was devastating to the hemophilia community. Since the mid 1980’s new screening and processing procedures have significantly decreased the threat to our nation’s blood supply.

Clinical Practice Guidelines for VWD

Rare Platelet Disorders click here

Medic Alert ID

Gateway Hemophilia Association assists with MedicAlert Memberships and IDs for patients with hemophilia and vWD.

A Medical Alert ID is essential for people with bleeding disorders. Wearing a Medical ID ensures emergency responders and hospital staff have up-to-date medical information the moment they need it to make informed decisions about treatment and care.

To apply for a Medic Alert ID due to financial hardship complete the Medic Alert Application

Or click here for information on HFA’s Helping Hands Reimbursement

For more information, call Bridget at (314) 482-5973 or email at info@gatewayhemophilia.org.

The National Bleeding Disorders Foundation’s (NBDF’s) publications contain informative resources for people with bleeding disorders and their families. These publications will be of use to healthcare providers, educators, librarians and other healthcare organizations.

Social Security Disability Benefits Guide

Missouri Department of Social Services

Illinois Department of Healthcare and Family Services

Comfy Caps

Guide for National and Local Mental Health Resources

Find a therapist

Healthcare

The Gateway Hemophilia Association believes strongly in Patient Choice (the right to receive comprehensive care; the right to choose the clotting factor you feel is safe, effective, and affordable; and choice when choosing a Specialty Pharmacy provider). We feel it is important for our members to have access to the resources that are available for them. Contact GHA for a list of Specialty Pharmacy Providers and Pharmaceutical Companies that provide services to those in the bleeding disorder community. We in no way endorse any specific company and have provided this information as a service to you. If you have further questions about services or products please discuss them with your physician.

Standards of Service for Pharmacy Providers of Clotting Factor Concentrates for Home Use to Patients with Bleeding Disorders

Manufacturer Partners

Patient Assistance Programs

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Upcoming Events
09/09/2024

Tee off 4 Hemophilia

Start Time: 1:00 p.m. Shotgun Start

The money raised at this tournament will be used to fund the programs and services provided throughout the year to people affected by bleeding disorders. GHA hosts educational conferences specific to bleeding disorders, funds research, supports advocacy, provides educational scholarships, provides emergency financial assistance, dental assistance, medic alerts, bleeding disorder camp, support groups for men, women, and teens. Click here for pricing and registration.

10:30 a.m. Registration / 11:00 a.m. Lunch / 12:00 p.m. Shotgun Start / 5:00 pm..…Reception, Silent Auction & Awards

09/12/2024

NBDF Bleeding Disorders Conference!

NBDF’s Bleeding Disorders Conference brings together families and passionate professionals for in-person education and networking.

NHF’s Bleeding Disorders Conference Info

 

09/20/2024

Gettin’ in the Game Junior National Championship

GHA has been invited to send two individuals with a bleeding disorder between the ages of 7-18 to the Gettin’ in the Game event which will take place September 20-22, in Henderson, NV. Participants will have the opportunity to learn the fundamentals of their respective sport, participate in friendly competition, and have a chance to connect with fellow members of the bleeding disorders community from across the country. Additionally, educational seminars focusing on the importance of physical fitness and other related topics will be available on site. Each participant will have the opportunity to choose either golf, baseball, swimming, or basketball for this year’s JNC.

To be eligible for nomination by GHA, participants must have a bleeding disorder, be between the ages of 7-18, and live in the GHA service area (i.e. southern Illinois, eastern Missouri). Applications are due July 11, 2024. Click here for an application.

chapter of excellence award from national hemophilia association 2017
chapter of excellence award from the national hemophilia association from 2018 - 2020

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