Bone fragility in patients affected by congenital diseases non skeletal in origin

This Month Was Bleeding Disorders Awareness Month - The Gazette

March is Bleeding Disorders Awareness Month. Throughout the month, the U.S. Inheritable blood and bleeding disorders community has been working to inspire national conversations around these rare conditions that affect thousands of patients and families nationwide. Bleeding Disorders Awareness Month has been observed since 2016 after being designated as a National Health Observance by the U.S. Department of Health and Human Services. Prior to BDAM, March was known as Hemophilia Awareness Month, proclaimed by President Ronald Reagan in March 1986.

Inheritable blood and bleeding disorders can be present from a genetic mutation or a random mutation. Conditions like hemophilia, von Willebrand's disease, sickle cell disease, rare platelet disorders, factor deficiencies and others can be extraordinarily challenging to manage day-to-day, as well as quite expensive. It's important to raise the profile of these chronic conditions faced by people in our very own community.

Everyone — whether a patient, caregiver, a loved one, or advocate — deserves accessible support and resources unique to them. Talk about it, share, and learn from one another. Start the conversation around bleeding disorders.

We can and must create more affordable and accessible treatments for the inheritable blood and bleeding disorders community by raising awareness and providing education. By raising our voices, we can have an impact, together.

To get more information about how to make a difference, visit the local Iowa Chapter of Bleeding Disorders of the Heartland at www.Bdheartland.Org.

Deb Raymond

Lehigh

Concord Monitor - Letter: Bleeding Disorders Awareness Month

Did you know that March is nationally designated as Bleeding Disorders Awareness Month? And recently, Gov. Ayotte signed a proclamation to declare March as Bleeding Disorders Awareness Month in the Granite State. This recognition aims to raise awareness about bleeding disorders with the general public and foster a stronger sense of unity among all individuals in the bleeding disorders community. To help raise awareness for those living with bleeding disorders in the Granite State, the Concord Hotel was lit in red on Friday, March 14. In New Hampshire, there are an estimated 100 people living with hemophilia and about 13,000 living with other types of bleeding disorders, including von Willebrand's disease. Having a bleeding disorder can be a very serious condition that often requires treatment and lifestyle modification. Thanks to recent medical advances, many bleeding disorders are able to be treated such that a person can live a productive life without fear of repeated hospitalizations or medical interventions. The Dartmouth Hitchcock Medical Center in Lebanon hosts a Hemophilia Treatment Center that is a critical source of medical expertise and support for residents of New Hampshire and Vermont with bleeding disorders. If you are interested in more information about bleeding disorders, visit the New England Hemophilia Association at www.Newenglandhemophilia.Org. Its mission is to create an inclusive community across all six New England states that empowers and enhances the lives of individuals with inherited bleeding disorders and their families.

Susanna von Oettingen

Warner

March Is Bleeding Disorders Awareness Month - WCPO 9 News

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Father Shares Son's Frightening Journey from Diagnosis to Treatment Regimen – and How 3 Million Americans with Bleeding Disorders Depend on the Kindness of Strangers for Lifesaving Treatments

Like 3 million other Americans with bleeding disorders, Tony Basa's son Andrew relies on human plasma donors for lifesaving treatment. At age 3, Andrew received a lifestyle-altering diagnosis for an active young boy: he had Von Willebrand Disease, a genetic condition that prevents blood from clotting to stop bleeding. Without extreme caution, he would face a lifetime of ER visits and emergency treatments.

Von Willebrand Disease is the most common genetic bleeding disorder, but its commonality doesn't make it any less frightening. There is no cure. But with the generous donations of human plasma donors, patients like Andrew are able to benefit from existing and developing therapies for countless rare and life-threatening conditions.

Now, as a patient educator for Octapharma, Tony Basa is passionate about sharing his family's story to encourage others on a similar journey. Tony shares why everyone should consider becoming a plasma donor – and to give an update on what Andrew is doing now!

Learn more at www.Octapharmaplasma.Com

#WCPO9Sponsor

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