Dana’s Living Her Life with No Regrets - Embracing Life with Hemophilia B and Finding Joy in Family Adventures

BY SHELLY FISHER

When we visited, Dana had just celebrated her 35th birthday and 3rd wedding anniversary with her husband and toddler in California at Disneyland before heading to London to see her sister and niece. Hands down, her son’s favorite parts of Disneyland were the rides, the train, and being introduced to Mickey Mouse. A highlight of her trip to London included taking a picture at Big Ben with her son, Benjamin, whose initials also just happen to spell B-I-G. “There’s a song about the clock that we always sing to Ben, so that was super fun!”

After participating in Education Day at her local hemophilia chapter in Colorado this year, she was excited to meet new people in the Colorado community and search for volunteer opportunities after moving back to Denver from Virginia. “I’m still finding my way around right now, but I am looking forward to doing more.”

Working from home for a financial advisory firm, Dana told me she splits her role between manager of client services and business development, and enjoys being a “jack of all trades.” She shared that she spends her time in various pursuits from setting up accounts to compliance, and “likes that every day is different.” Dana told me that spending time with her family is one of the most important things to her, and they get outside as much as possible by taking Captain Maverick Velociraptor, a Beagle mix otherwise known as “Mavie,” to all of Denver’s dog parks, kayaking, biking, swimming, and “wherever we can enjoy our time outdoors and spend time with our family.”

One of two siblings, she confided that even though she had experienced bleeding symptoms throughout her life, her brother was the only one initially diagnosed with hemophilia B. The issues she experienced were normal for the women in her family and she “just dealt with them.” Since women were not typically diagnosed with bleeding disorders at that time, it never occurred to Dana that hemophilia might be the cause of her symptoms.

After a medical procedure at the age of 23 resulted in an uncontrollable bleeding episode, it was her brother who advised her to get tested, and as a result, she was diagnosed with mild hemophilia B. Dana soon began the search for doctors capable of managing the symptoms she had been experiencing her entire life, and found, to her dismay, that many doctors still did not believe that women had bleeding disorders.

It was only after finding the Colorado Hemophilia and Thrombosis Center that she discovered a medical staff familiar with women and bleeding disorders. Later, when Dana became pregnant, she was able to have a natural birth with no major complications after careful preparation and collaboration with the doctors there prior to the birth of her son.

When asked what advice she would give someone who has been newly diagnosed, she offered, “Find a female friend in the community. It’s helpful to have someone who is going through the same thing, or someone you can confide in and get feedback from.”

Dana also said, “Having family and friends in the bleeding disorders community to talk to has made all the difference. My mom taught my brother to be a great advocate for himself and he taught me the same thing.” She credits her brother for recognizing her symptoms and encouraging her to get diagnosed. “Thank God my brother was there for me. I don’t know where I would have been without him.”

What would her friends say is her superpower? “I have empathy. I try to understand how people deal with what they are dealing with, and I try to relate to that.”

Dana confided that she lives by a simple rule: “You only have one life. Don’t have any regrets.”