In 2002, three-year-old Collin Johnson underwent a tonsillectomy. Just a couple of days later, after Collin woke up from a nap, Stormy noticed a large pool of blood on the pillow. Was it from the tonsillectomy? Or was this another issue altogether? Just to be safe, Stormy took Collin to the emergency room. This trip ended up being important; it was the catalyst to diagnosing Collin with a rare hereditary bleeding disorder called hemophilia B. More so, shares Fox 5 Atlanta, it was the first step in a long journey for Stormy to receive her own diagnosis. 

Stormy’s Story

You see, as Collin grew older, Stormy helped him to manage his condition. He would often fall and experience severe knee bleeding. By ten years old, Collin had already learned to give himself factor IX infusions. These infusions help Collin’s blood to clot the way that it should. Stormy always encouraged Collin to learn about hemophilia B – and she was learning too! She even joined a local hemophilia chapter, shares Portraits of Progress, a gallery based on stories and advances within the hemophilia community. 

But then Stormy started to wonder if she herself had hemophilia B. After all, her menstrual cycles were often heavy and extremely long. She sometimes found herself bleeding for over a month. So she dove into research (and, of course, brought the idea to her doctor). 

However, her doctors didn’t believe that she needed to worry. After all, they said, she was most likely just a carrier; hemophilia B typically only affects males. While she might have some slight symptoms, she would most likely not need treatment. But Stormy kept pushing. Finally, in 2015, thirteen years after her son’s diagnosis, Stormy received her hemophilia B diagnosis. 

Although the belief is that women often do not require treatment for this condition, Stormy began factor IX injections. She hopes that they will help her manage her condition and ultimately feel better. 

Moving forward, it is crucially important to advocate for greater research into hemophilia B in girls and women to better understand its impact. 

Hemophilia B: An Overview

Hemophilia is a rare inherited bleeding disorder in which the blood lacks enough clotting protein. In the most common form (hemophilia A), individuals lack factor VIII. Hemophilia B, on the other hand, is characterized by factor IX deficiency. Because of this, the body cannot clot blood properly, causing extended bleeding. This bleeding may be caused after surgery, accidents, tooth extractions, or other injuries. However, in more severe cases, individuals may experience spontaneous bleeding. 

For those with hemophilia B, bleeding episodes tend to begin as children, though the number of bleeding episodes often lessens with age. Symptoms can (but do not always) include:

• Easy bruising
• Blood in the urine or stool from urinary/gastrointestinal tract bleeding
• Frequent or long-lasting nosebleeds
• Prolonged bleeding from cuts, abrasions, surgeries, etc. 
• Joint pain and swelling (from bleeds near joints)
• Unprovoked spontaneous bleeds
• Headache (if bleeding in the brain)
• Neck stiffness (if bleeding in the brain)
• Vomiting (if bleeding in the brain) 

Please note that this is not an exhaustive list of symptoms.