Meet Laura - New York, USA

Delayed Diagnosis
2012

I was 46 years old when I was diagnosed with von Willebrand disease... by a pediatrician!

I went with my teenage son for his annual physical. During the appointment I asked the pediatrician if my son could be tested for allergies. The doctor asked me why I would want to have him tested. I explained that he has been getting a lot of nosebleeds and I thought maybe he was allergic to something in our house.

I was surprised when the doctor turned to me and started asking me about my medical history.

"Do you or your husband get bloody noses?" He asked.

"I used to but not so much anymore," I responded.

"How is your menstruation? Do you have heavy periods?"

At this time my son was sitting on the table trying in any way possible not to hear the answer to this question and wondering when the appointment was going to end. The last thing he wanted to know about was his mother's cycle.

I answered, "Before my hysterectomy, my periods were very heavy and lasted a long time." My son now had his hands over his face. I think he would have put his fingers in his ears, but that wasn't cool. I continued, "but now, obviously, they are no longer an issue."

The doctor asked, "Did you have a hysterectomy because of the heavy bleeding, or where there other issues. Did you ever have your wisdom teeth pulled?"

Now my son really wanted to leave, he got off the table and started for the door. I could see it on his face -- get me out of here!

I started to explain. "I have always had heavy periods, but recently my periods wouldn't stop. I was bleeding for six months straight, to the point my iron levels were so low they were worried that something would happen to me if we didn't stop the bleeding. And yes, I did have three of my teeth pulled, but on the fourth tooth when they gave me the Novocain I developed a hematoma and they couldn't pull the fourth tooth out. I never wanted to go back after that; the pain and bruising from the tooth the dentist couldn't pull was worse than the pain from the ones he did pull."

The doctor continued to ask questions then he said, "I think you and Brian have von Willebrand disease and you should both be tested for this. I think you should also have Kevin (Brian's twin) and Colleen (Brian's sister) tested because it is an inherited bleeding disorder."

I had no idea of what von Willebrand disease was. Women didn't have bleeding disorders, or so I thought!

As we started going through my history I realized that there were so many signs that I did have von Willebrand disease but I just never knew, and neither did my doctors. Soon after my son's visit to the pediatrician we were all tested. My boys and I came back with a positive test for type 1 von Willebrand. Our disorder is mild. My daughter tested negative but because the test is sensitive to hormones she will need to go back and be retested.

So why didn't anyone diagnose me before? During these years I had gone to my ob/gyn frequently and a hematologist/oncologist a few times. Doctors routinely asked about my menstrual cycles and I would say they were heavy and lasted up to seven days, but my mom always had very heavy prolonged periods so I assumed it was natural.

When I delivered my twins my second delivery was a c-section. After the delivery I was told that I had lost two liters of blood. My hematocrit was 17%. I didn't know what that meant at the time, except that I would need a transfusion before I could leave the hospital if I didn't get that number up to 20%. What I found out later is an average hematocrit for women is 36.1 - 44.3%. I honestly don't think my iron levels quite recovered until after my hysterectomy 12 years later.

A few years after the delivery of my boys I started having prolonged/heavy bleeding. I was always tired and I forgot things. One night one of my sons came into my room to talk with me about something and I could not remember his name! That scared me more than anything I had been experiencing. At that point I felt it was time to become more aggressive in treating the bleeding. I went to my ob/gyn again now more concerned than ever.

First I was placed on a birth control pill. That helped slow down the bleeding but didn't stop it completely. The doctor performed a biopsy; it came back negative for cancer, but did not explain what was causing the bleeding.

The next step was an endometrial ablation, a procedure that destroys the uterine wall to stop the bleeding. I continued to bleed after the procedure. Last was the hysterectomy. For the most part that stopped the bleeding. I opted to leave a small part of my cervix in and that continues to bleed once a month. Still no one could tell me what caused the heavy bleeding.

A year ago, I was going through the want ads. I had taken some time off and was ready to go back to work. The Bleeding Disorders Association of Northeastern NY was hiring a part-time person. I applied. When I went into my interview the first question asked by the board of directors was "what do you know about bleeding disorders?" I answered, "More than I did a few months ago."

My family was lucky to have a pediatrician that recognized our bleeding disorder and encouraged us to follow up with the testing... My son however never wants me to bring him back for his annual physical.

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Laura grew up all over the world on Air Force bases and graduated from college with a major in Journalism.  She currently lives in the Albany, NY area with her husband and three children; one daughter and twin boys. She and the twins have von Willebrand's. She works at the Bleeding Disorders Association of Northeastern New York. 

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