March Is Bleeding Disorder Month
In 2016, the month of March was deemed “National Bleeding Disorders Awareness Month,” an opportunity for those living with or caring for someone who lives with a bleeding disorder to raise awareness for the condition. Bleeding disorders can be particularly challenging, sometimes resulting in debilitating pain for those with the diagnosis.
The goal of designating a month of awareness was made to increase education amongst the general public about bleeding disorders, but also to increase basic knowledge amongst people who could make a difference for those living with blood disorders, namely policymakers, elected officials, public health authorities, scientists, and healthcare professionals. When people in positions of power gain knowledge about how challenging these disorders can be, there is a greater hope for research, a cure, and more accessible treatments.
The two most common blood disorders are hemophilia and von Willebrand Disease, but the common denominator between all blood disorders is the body lacking an ability to form necessary blood clots. Overall, approximately 1%, or three million Americans, live with a bleeding disorder. Of those, about 30,000 have hemophilia.
Most people who live with a bleeding disorder come to it genetically, meaning it was passed on from their parents. Other causes of bleeding disorders are liver disease, a low red blood cell count, a vitamin K deficiency, or in some cases, harmful side effects from medications, but that is extremely rare.
Blood disorders used to be known as the “royal disease” or the “disease of kings,” as England’s Queen Victoria who ruled for most of the 1800s was a genetic carrier and three of her children, and several of her grandchildren were diagnosed with hemophilia. Because it was customary for royals to marry within family at the time, blood disorders plagued several generations before the genetic component was more thoroughly understood.
Bleeding disorders share common symptoms. Those include:
Unexplained or frequent bruising
Heavy or extended menstrual bleeding in women
Frequent and unexplained nosebleeds
Excessive bleeding with small cuts, dental treatments, or minor injuries
Bleeding into joints, causing unexplained joint pain
The most common treatments for bleeding disorders are iron supplements, blood transfusions, use of nasal sprays or topical medications, and the injections of clotting factors. When diagnosed with a blood disorder, some of the most common complications are internal bleeding, joint pain, and anemia.
Bleeding disorders are generally categorized as mild, moderate, or severe. How impacted an individual is by their disorder is determined by their degree of disease. Those with mild symptoms live typical lives. Those with severe disease may experience more frequent hospitalizations, pain, and until relatively recently, a lifespan that was much shortened.
In the early 1900s, a child diagnosed with a bleeding disorder had a life expectancy of only 14 years. With the advent of using blood transfusions as treatment, that life expectancy stretched to age 20 by the 1950s. Life expectancy was extended to age 24 in the mid-1960s when research continued to expand treatments. Today, most individuals diagnosed with a bleeding disorder can expect to live a full life if they are educated about their illness and manage their treatment.
Dr. Srilata Gundala is a hematologist/oncologist and founder of the Hope & Healing Care Center in Hinsdale, Illinois where she treats patients with blood disorders as part of her practice, “Blood disorders are now considered a chronic condition. Treatments have advanced tremendously and what used to be a terminal disease is now a treatable disorder. That is remarkable progress. If you are looking to support people living with blood disorders, one of the most important things you can do is to donate blood. March is a wonderful time to do just that.”
You can learn more about the treatment of blood disorders HERE and answers to FAQs HERE.
Written By: Sheila Quirke, MSW
Reviewed By: Srilata Gundala, MD
