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March Marks Bleeding Disorders Awareness Month

By Lynne Kinst is the Executive Director of the Hemophilia Council of California (HCC) and founder of the California Rare Disease Access Coalition, an initiative of HCC.

March 7, 2024

March isn’t just about the promise of spring in California; it’s also a time to shine a spotlight on an often-overlooked health issue: bleeding disorders. With bleeding disorders affecting thousands of Californians, March serves as a crucial period for raising awareness, fostering understanding, and advocating for those living with these conditions.

Understanding Bleeding Disorders: Bleeding disorders encompass a range of inheritable conditions characterized by the body’s inability to form clots properly, leading to prolonged or excessive bleeding. Among the most well-known bleeding disorders are hemophilia A and B, von Willebrand disease, and rare clotting factor deficiencies. Without treatment, people with hemophilia and von Willebrand disease can face frequent, spontaneous bleeding episodes in their joints, muscles, internal organs, and brain. Hemophilia affects at least 4,000 people in California and von Willebrand disease affects at least 360,000 people in California. While some individuals may experience mild symptoms, others face significant challenges managing their condition and maintaining their quality of life. Unfortunately, many also go without a proper diagnosis.

The Importance of Awareness: Awareness serves as the cornerstone of support for those affected by bleeding disorders. By raising awareness, we shed light on these misunderstood conditions and encourage diagnosis, prompt treatment, and access to quality care. Moreover, heightened awareness fosters a more compassionate and inclusive society, where individuals living with bleeding disorders feel understood and supported in their journey.

Addressing Stigma and Misconceptions: Despite advancements in medical research and treatment options, stigma and misconceptions surrounding bleeding disorders persist. Many individuals face discrimination or misunderstanding due to their condition, hindering their access to education, employment, and healthcare. Bleeding Disorders Awareness Month provides a platform to challenge these stereotypes, promote education, and advocate for policies that protect the rights of those affected.

Supporting the Bleeding Disorders Community: Throughout March, communities across California come together to support individuals and families affected by bleeding disorders. From educational seminars and fundraising events to outreach initiatives and support groups, various activities aim to empower and uplift those navigating the challenges of these conditions. Additionally, healthcare providers play a vital role in offering specialized care and guidance tailored to each individual’s needs.

Advocating for Change: Beyond raising awareness, Bleeding Disorders Awareness Month serves as a catalyst for advocacy and policy change. By amplifying the voices of those living with bleeding disorders, advocates strive to improve access to affordable treatment, expand research funding, and enhance healthcare infrastructure. Through grassroots activism and legislative efforts, California continues to lead the way in championing the rights and well-being of its bleeding disorders community.

Visit the Hemophilia Council of California for more information and to learn how to help:

Lynne Kinst is the Executive Director of the Hemophilia Council of California (HCC) and founder of the California Rare Disease Access Coalition, an initiative of HCC. The Hemophilia Council of California’s mission is to improve access to care and treatment options to advance health outcomes and the quality of life for people with bleeding disorders through advocacy, education, and outreach in collaboration with its founding organizations.