When Jessamyn Butler would get nosebleeds as a child, her mother would tell her the length of the bleed was normal, no matter how long it took for it to stop.

It wouldn’t be until Butler was 38 years old that she learned that those nosebleeds weren’t normal, but a symptom of a bleeding disorder, von Willebrand disease, which affects about 3% of the population.

Butler’s mother and grandmother died of hemorrhagic strokes which, combined with their own heavy bleeding tendencies, points to them possibly having had von Willebrand disease as well. Now, Butler is an advocate for the Western Pennsylvania Bleeding Disorder Foundation and helps people experiencing similar symptoms determine if they have a bleeding disorder before it results in lasting health consequences.

“They both died of hemorrhagic strokes; they bled out in their brain,” Butler said of her mom and grandmother. “I only got diagnosed when I was 38, and only because I went to a doctor who was progressive, forward-thinking, and because she tested me for a whole bunch of different things.”

On Wednesday, March 26, Butler and Jessica Lee, development director for the Western Pennsylvania Bleeding Disorders Foundation, received a proclamation from the Butler County commissioners marking National Bleeding Disorders Awareness Month, which is March.

Lee said data from the Centers for Disease Control and Prevention shows that it can take an average of nearly 20 years for a person to be diagnosed with a bleeding disorder and the foundation is trying to shorten that wait.

“Part of our bleeding disorders awareness campaign is to spread awareness of the symptoms,” Lee said. “We're packing period kits and nosebleed kits and passing them out to school nurses, because we believe they're the front-line care workers for students in elementary to high school.”

According to information from the Western Pennsylvania Bleeding Disorders Foundation, there are numerous inheritable bleeding disorders, the most common being hemophilia and von Willebrand disease.

Hemophilia is a rare genetic blood disorder caused by a deficiency or defect in one of the proteins necessary for blood to properly clot. People with hemophilia don’t bleed faster than others, they bleed longer because the blood does not clot properly.

Von Willebrand disease is a lifelong bleeding disorder that also prevents blood from clotting properly. Von Willebrand disease is more common than hemophilia, according to information from the foundation.

Lee used the metaphor of dominoes to describe how blood would clot for a typical person versus a person with a bleeding disorder.

“If you think of a line of dominoes, if you're somebody who doesn't have a bleeding disorder, we get a cut, all the dominoes fall and then the factor will make you scab to cover up that,” Lee said. “But if you have a bleeding disorder, you're missing one of those, so the dominoes don't fall completely, and it takes much longer to clot.”

In Butler’s case, she is deficient in proteins that help blood to clot, and learned recently that her condition falls more in line with von Willebrand disease than hemophilia.

“They were under the assumption I had Hemophilia A — last January I found out I have a second, rare type of the von Willebrand disease,” Butler said.

It wasn’t until recent years that doctors confirmed females could have hemophilia or von Willebrand disease, even though the former is rarer in women compared to men. Butler said although she did not get diagnosed until her late-30s, the signs of her having von Willebrand disease were there from an early age.

“For a long time, doctors said only men can have a bleeding disorder, and so women were not looked at as being able to have that even if they had the symptoms,” Lee said.

Although some bleeding disorders are lifelong conditions, Lee said research has lead to better outcomes for people with bleeding disorders, and those diagnosed with them have more options for treatment than before.

“Treatment has advanced a lot so adults, children can pretty much live normal lives as long as you have a diagnosis with the treatments we have available,” Lee said. “Since bleeding disorders are so rare … certain doctors, it's not well-known. They won't pick it up right away.”

Butler is an advocacy ambassador for bleeding disorders with the foundation, which she has been involved with since 2008. She said the foundation’s base used to be close to where she lived in Cranberry Township when she was first diagnosed with von Willebrand disease. She said the staff there helped her get involved right away, which also helped her learn more about the disease and how it affects people.

“That would have been 2008, and I have volunteered since then,” Butler said. “I do school things, doctor things, especially gynecologists. We had an advocacy program.”

Butler now lives in Slippery Rock, and continues to deal with symptoms of her bleeding disorder, even though she has gotten some treatment for it since her diagnosis. She explained that small “nicks” can cause her to bleed for a long time, and even a simple nosebleed can be a major inconvenience.

“All of a sudden you can taste pennies. You smell it and taste it simultaneously,” Butler said of her nosebleeds. “Shaving legs — I hate to do it — one tiny nick and I have rivers. I am standing in the shower shaving and I have rivers pooling around my feet.”

These symptoms have affected Butler since she was a child and they were dismissed by her mother, potentially because she suffered from similar symptoms. Several of Butler’s children also have bleeding disorders and she was able to get them diagnosed at an earlier age than she was. However, one of her seven children died young from bleeding complications.

“I have been told my whole life, 'Oh, that's normal for you.' You're bleeding the amount and length of time, that's normal for our family. You've just got to live with it,” Butler said. “I had very heavy periods, nosebleeds — I had my nose cauterized so many times.”

Lee added that women may not be diagnosed as early because they are discouraged from talking about their period flow and other symptoms that could point to a bleeding disorder.

In addition to visiting the county commissioners meeting, Lee said she and the foundation’s officials meet with school personnel to help them address students who may be experiencing symptoms of a bleeding disorder.

The foundation is supplying “a bunch of information and resource cards, and we're encouraging the nurses to highlight students who come down with a nosebleed, give them the kits and supplies to stop nosebleeds and extra period products,” Lee said. “What we want them to do is, the kids will take the resources home to their parents, the nurse can talk to their parents and maybe we can increase diagnosis.”

Butler said people should be aware of the length of time their blood flows, because it cold mean they are suffering from a bleeding disorder.

When you're undiagnosed and have repeated trips to the ER for the same thing, you would think they would say, 'Hey, there's something going on here,’” Butler said.

For more information on the Western Pennsylvania Bleeding Disorders Foundation, visit its website at wpbdf.org.