The month of March is National Hemophilia Awareness Month, and I’ll admit, when I was tasked with this blog post, my initial thought was, “Hmm… I think I know what that is, but I’m not 100% sure,” because although I thought I knew what Hemophilia is, I didn’t truly understand the impact it can have on a person’s everyday life. I didn’t know that in the United States, approximately 20,000 people are living with Hemophilia.
What is Hemophilia?
The dictionary says it’s:”A medical condition in which the ability of the blood to clot is severely reduced, causing the sufferer to bleed severely from even a slight injury. The condition is typically caused by a hereditary lack of a coagulation factor, most often factor VIII.”
The National Hemophilia Foundation, however, had a bit better and more comprehensive definition. Hemophilia is a bleeding disorder– a general term for a wide range of medical problems that lead to poor blood clotting and continuous bleeding. When someone has a bleeding disorder they have a tendency to bleed longer.
After an injury, in a “normal” situation, bleeding starts, vessels constrict, platelets plug up the leak and Fibrin clot it which stops the bleeding. In those with Hemophilia, bleeding starts, vessels constrict, but incomplete platelets plug, bleeding continues and there’s a delayed formation of Fibrin to clot the injury, and bleeding continues. Needless to say, Hemophilia can very easily escalate a small injury into a life-threatening situation.
What causes Hemophilia?
According to the National Heart, Lung, and Blood Institute, Hemophilia is an inherited disorder. It’s caused by a defect in one of the genes that determines how the body clots blood (factor VIII or IX). These genes are located in the X Chromosome (women two X chomosomes, and men have an X and a Y). A woman must have defects in both X chromosomes to cause Hemophilia, but in a man, only one needs to be defected in order to cause Hemophilia, which is why more men than women have Hemophilia.
What are the symptoms and risks of Hemophilia?
Some of the core symptoms of Hemophilia include many large and deep bruises, joint pain and swelling, unexplained or excessive bleeding, blood in the urine or stool, prolonged bleeding from cuts or injuries or after surgery, nosebleeds with no known cause, in infants, unexplained irritibility, and unusual bleeding after immunization.
How is Hemophilia diagnosed?
Hemophilia is diagnosed after a series of tests called a coagulation study. When a family member is diagnosed with Hemophilia, it is important that other family members are also tested (especially siblings and children) since Hemophilia is an inherited disease.
What is the treatment for Hemophilia?
Standard treatment involves replacing the missing clotting factor. Mild Hemophilia can be treated with demopressin which helps the body release factor VIII that is stored in the lining of blood vessels. To prevent a bleeding crisis, people with Hemophilia and their families can be taught to give factor VIII concentrates at home with the first signs of bleeding. A Medical ID is also recommended in the event that a Hemophilia patient is rendered unable to speak for him or herself in the event of a bleeding crisis. First responders are trained to look for Medical IDs in the event of an injury. It’s especially important that children with Hemophilia wear Medical ID jewelry. Medical IDs can speak for the child when he or she can’t.
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