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
04/26/2024

Adult Retreat

We are stronger together!

The Adult Retreat is for adults with a bleeding disorder ages 21+ within GHA’s service area. This retreat will allow you to connect with other adults living with a bleeding disorder. Each adult with a bleeding disorder may bring one significant other. You will learn something new and leave being empowered to be a better advocate. Connect during fellowship, food, education, and FUN! Click here for a draft Agenda. Registration deadline is April 1st, click here to register!

05/09/2024

Give STL Day

 

DONATE HERE

You Can Make a Difference!
Join the movement and make a gift to benefit our community.
Give STL Day is an annual event which raises money and awareness for nonprofits in the St. Louis region. Since its inception in 2014, Give STL Day has raised over $26.2 million.
05/16/2024

Taste of Tequila, Splash of Charity

Start Time: 6:00 p.m.

End Time: 8:00 p.m.

All proceeds benefit educational scholarships for our members with a bleeding disorder. 

Featuring:

Tequila Tastings from Milagro, Espolon, & TBD

Ticket includes one Sunny’s Specialty Margarita or Beer

Photobooth by Fête Booth

Dinner Buffet from Sunny’s Cantina

Silent Auction & Live Music from 2 Pedros

Tickets are $50 in advance, $60 day of the event

*must be 21+ years of age, space is limited

Questions (314) 482-5973  info@gatewayhemophilia.org

Register here!

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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