Spotlight: Jackie Heney
To celebrate March as Bleeding Disorders Awareness Month, we are conducting short Q&As to learn more about members of our community!
This week, we’re interviewing Jackie Heney. Jackie is seen here with her son, JJ.
What and when was your diagnosis?
I have Hemophilia A, along with possible Von Willebrands Disease. I come from a long line of male bleeders. My grandpa had hemophilia, my mom’s (male) cousin has hemophilia and they knew since birth.
My mom and I always had signs and symptoms our whole lives, but we were told we couldn’t have hemophilia ourselves, as women. When I was about 20, my mom nearly died from blood-loss during surgery. She was undiagnosed at the time. She remembers being shaken into consciousness, and being asked “what factor was your father deficient in??”. She said “factor 8” and went unconscious. Luckily the surgeon had frantically contacted a hematologist in the hospital when unable to stop the bleeding. He saw that her family history said her father was a hemophiliac and put the pieces together. He gave her factor and saved her life. After recovering, she followed up with the hematologist and was tested. She had levels low enough to be a hemophiliac herself. He said I needed to be tested, and low and behold, I also had hemophilia.
What does bleeding disorders awareness month mean to you?
To me, Bleeding Disorders Awareness Month is a badge of honor. It’s a chance to educate others about what it means to have hemophilia….. and WHO can have it. Hemophilia is a family affair for me. I hate that it took my mother nearly dying for us to be taken seriously as female hemophiliacs.
What is the best part about being part of the bleeding disorder community and how has have a bleeding disorder shaped your life thus far?
Maybe 6-7 years ago, me, my mom, and my husband started attending hemophilia education events. It’s been fascinating to meet others in similar situations. Because of our experiences with the community, I felt prepared to give birth, and to face the diagnosis of my son. I even learned how to self-infuse!
Now that I’m also the mother of a hemophiliac (4th straight generation), I feel even more strongly about being a part of the bleeding disorder community. Our boy was born at the start of the pandemic, and we’ve been quite isolated. My husband and I can’t wait to get back to in-person events, this time as parents….where we can learn about hemophilia from a parental perspective!
What advice would you give to parents of children with bleeding disorders?
My biggest advice would be to go easy on yourself. There are going to be awful bruises. There will be E.R. visits. There will be worry. But you are your child’s biggest advocate. Become the expert, know how mix and administer factor, and always carry your HTC treatment letter… because it is very likely that YOU will know better than the doctors at the hospital!
About Bleeding Disorders Awareness Month
In 2016, the US Department of Health and Human Services (HHS) officially declared March as Bleeding Disorders Awareness Month! This month aims to foster a stronger sense of unity among all individuals in our community, and to elevate awareness to the general public. Learn more here.
