Originally published on Hemophilia News Today by BioNews, Inc.

I recently participated in a webinar called “Mild Matters,” organized by the Hemophilia Federation of America. The purpose was to discuss challenges faced by people with mild bleeding disorders. When the discussion turned to self-advocacy, I began to think about my own history of dealing with von Willebrand disease and hemophilia B.

I’ve gotten pretty good at advocating for myself, but that wasn’t always the case. There are lessons to be learned from one of my experiences in particular.

In 2006, I found myself in the emergency room due to vomiting and severe abdominal pain from a small bowel obstruction. This is a blockage in the small intestine that’s like a kinked pipe that doesn’t allow anything to pass through it. Pressure in the intestines builds up, and the pain can be severe. The consequences can also be deadly if not treated urgently.

The ER doctor wanted to place a nasogastric (NG) tube to help relieve the pain and pressure. An NG tube is flexible and is passed through the nose, then the esophagus, and into the stomach. One function of an NG tube is to suction the contents from the stomach, relieving the pressure and pain caused by the obstruction.

I panicked at the thought of the NG tube being shoved into my nose. I envisioned a slasher-type movie scene with blood gushing from it. Von Willebrand disease causes mucosal bleeding, including nosebleeds. I told the ER doctor of my bleeding disorders and explained that I might need treatment before such a procedure. He didn’t think placing the tube would cause bleeding and gathered the required equipment.

Enlist the help of others when needed

I needed to be sure this procedure wouldn’t cause bleeding. I’d learned that it’s easier to prevent bleeding than to stop it.

I pulled up the number of my hematologist on my cellphone. I gave the phone to my mom, who thankfully was sitting in the exam room. My mom is timid, but I needed her help. I was experiencing too much pain to think clearly or talk on the phone, so my mom spoke for me.

After a short discussion, she handed the phone to the ER doctor. My hematologist told the ER doctor I would need treatment before the NG tube was placed.

I was in severe pain and vomiting for hours longer than I needed to be. A delay in finding and infusing medication meant I was at risk for my bowel rupturing, which thankfully didn’t happen.

After seven days in the hospital, they were having a hard time finding the cause of my bowel obstruction. Suddenly, a surgeon I had never seen before entered my room with a team to take me to the operating room. He said I had a rare internal hernia that was causing the obstruction.

An internal hernia is inside the abdomen. I had never heard of such a thing and had no idea I had it. But it did explain the intermittent abdominal pain I had been suffering from for years. My small bowel was tied into a knot.

When I asked if they knew of my bleeding disorders, the situation went from you need surgery now to let’s wait a day or two to see what happens. After involving my hematologist, I had a treatment plan and had surgery the next day.

How I could have done better

Unfortunately, I wasn’t wearing my medical alert bracelet. A hemophilia foundation in Florida pays for medical alert bracelets once a year. I am grateful for mine, which clips onto my watchband. If I’d been wearing it, the ID could’ve lent credibility to my claims of having bleeding disorders, and maybe the doctors would have taken them more seriously.

I also didn’t have a treatment letter with me. This letter from a hematologist defines a patient’s conditions and the treatments needed. It also provides contact information in the event of an emergency.

My treatment was different back then, but now I keep at least two doses of each medication on hand in my refrigerator. In an emergency, I would either infuse myself first or bring the medicines with me to the ER.

Advocating for yourself is crucial, especially when you are a woman with hemophilia or have a mild bleeding disorder. I hope that sharing my experience will help you to be better prepared to advocate for yourself in an emergency.