Up until Anna was 19 years old, she never noticed any abnormal bleeding symptoms. In 2014, she underwent oral surgery, which to her wasn’t a cause for concern, because she recalls having other oral surgeries in her life and experiencing no complications. Yet, after this procedure, she had to return several times due to clotting issues. During this time, she was prescribed a lot of ibuprofen and noticed she was bruising more than usual. Even just scratching an itch left a mark. Her nosebleeds became more frequent as well, and she remembers having multiple blood tests done to nail down a diagnosis.
At first, doctors believed it was von Willebrand Disease (VWD), but her diagnosis was later confirmed to be Factor XI Deficiency. “The first doctor I saw did not specialize in benign hematology,” Anna said. “He told me that I probably could not safely continue hurdling as part of my university’s track and field team.” Anna met with another doctor, closer to where she went to college, who told her not to worry about this diagnosis at all. “He told me that this disorder is usually only diagnosed in ‘older men getting hernia surgery.’ These were two drastically different initial responses from doctors.”
Five years after receiving her diagnosis, Anna started to be seen by the Hemophilia Center of Western Pennsylvania (HCWP). At this point, she didn’t think her bleeding disorder was a big deal and only started seeing a hematologist because her orthopedic surgeon recommended it prior to her knee surgery. Anna is grateful for the work and support of the HCWP, especially because there were many hiccups while preparing for, and after, her surgery.
“The prophylactic infusion was not administered properly in the hospital, and I had an allergic reaction, delaying the surgery,” Anna said. “Then after, I ended up getting a joint bleed, which is very uncommon in FXI deficiency and was definitely not expected. I realized that [my diagnosis] would be something I needed to consider moving forward. The HCWP clinicians and the WPBDF community helped me so much as I figured out what my diagnosis meant and how to manage it.”
Anna currently works in healthcare and understands how difficult it can be to navigate the system under normal circumstances. She recognizes how much harder it can be to ensure healthcare providers understand your needs when you have a rare diagnosis like a bleeding disorder. “It’s important to learn about your diagnosis and build skills in advocating for yourself at medical appointments. It’s not always fair that this is how it works, but it is what it is and so it’s our job to advocate.”
She hopes through more advocacy and awareness; it can be easier for women and girls to receive their bleeding disorder diagnosis and start receiving the care that they need. “People should know that there are options to alleviate symptoms like heavy menstrual bleeding,” Anna said. “In addition, I know a lot of people might not know they have a bleeding disorder and then experience dangerous complications during procedures or when giving birth. A lot of people think that only boys/men have bleeding disorders, but even just spreading awareness that women/girls/menstruators do can help improve care for this population!”
You can join Anna in raising awareness for bleeding disorders by donating to the Western Pennsylvania Bleeding Disorders Foundation today! Your donation will stay 100% local to provide support to affected individuals throughout the 26 counties of Western Pennsylvania!
Every dollar counts — and every donation brings us one step closer to a stronger, more supported community. Donate online at: https://wpbdf.org/donate.