Ashley Zebley
By Renae Baker
Ashley grew up watching her dad infuse so often that it seemed like an everyday occurrence to her. As a child, she accompanied him to his HTC appointments and felt she knew everything there was to know about hemophilia at the time.
Her father grew up in the 1960s with severe hemophilia B. It was a time when everyone was afraid of hepatitis and little was known about caring for a child with hemophilia. She has seen photos and heard stories about how he spent much of his time in the hospital. Her heart aches for the little boy who seemingly took up residence in a hospital - birthdays, holidays, and days filled with excruciating pain while away from his family.
“I’ve been fortunate and not fortunate to have been very familiar with hemophilia my whole life. You can look at my dad and see he has been physically affected by this. For me growing up, it was difficult because it impacted everything he did and took a toll on his mental health,” Ashley says with notes of gravity and thoughtfulness.
Ashley knew from the get-go she was an obligate carrier. “I started to understand what that meant for me when I reached puberty. That’s when my parents talked to me about what it could mean for me if I had children. And then I got my lovely period!” she says through a rueful, irresolute laugh. “I knew what I was going through could not be what every girl goes through. There was no way people bled the way I did. I knew something wasn’t right.”
Ashley’s father started to take her to HTC visits. Around this time she began having severe pain in her right knee. She had her first knee surgery at twelve years old. Currently at twenty-nine years old, she has logged eight knee surgeries and has more ahead of her.
Ashley decided to have children early in life. She had her first child at eighteen years old. She credits the HTC with the straight-talk guidance they gave her. It was encouraging with notes of caution: “They wanted to bring me comfort if I wanted to have kids. I knew the risks: if I had a boy, he could have hemophilia. If I had a girl, she could be a carrier. However, they said, “Your kid could be born with a number of things - your kid could have cancer or diabetes. You just happen to know there is this one gene you carry, so if you want kids, don’t let that stop you.”
Perhaps the loudest point the HTC wanted Ashley to hear was, “Hemophilia today is not what you saw growing up with your dad.” Ashley took that to heart and says, “Even if it was, I’m not sure it would have impacted my decision. It may have because it was very difficult watching what he had to go through, but I was so grateful for their support.”Going to Coalition, other national conferences and local chapter meetings has given Ashley a clear vision of what it’s like in this generation for kids who have hemophilia.“These meetings brought me a lot of comfort,” Ashley says. “It still isn’t easy for people, obviously, but it isn’t what I thought it could be.”
With no disrespect to the boys and men, Ashley smiles and reveals, “I lucked out and had three girls!” Now Ashley finds herself at a point in her journey where she wants to give them answers. “As I said, I’m privileged. I know I’m a carrier, but they have no idea yet. I want them to have that knowledge, but I’m finding getting their carrier status tested practically takes an act of congress and a lot of money, so I’m battling through figuring out how to get them tested.”
Considering Ashley has a family history of hemophilia, one wouldn’t think it wouldn’t be so difficult. Ashley explains, “What the HTC told me was that insurance looks at it as though it’s a benefit for us when we want to have kids, but it’s not covering our kids.” Ashley is going to try to fight it by pointing out that if her daughters are carriers, it may affect them when they go through puberty, which is right around the corner for two of her daughters. “I want to know if they are more likely to bleed and need surgeries and those kinds of things.” Ashley continues, “We’re going to get their levels checked, but the issue I have with that is that although my levels are normal, I still bleed.” This seems to be a common phenomenon among carriers.
Ashley has received some resources from the Coalition and is determined to do what is possible to get answers for her daughters. “It shouldn’t be this hard, though.” she laments. This is the change in the system Ashley would most like to see.
“As I go to women’s retreats and other Coalition events, I keep hearing women say, ‘I wish my family had talked about it.’ For some, it was a tabu subject.” Ashley sees that there is a lot of fear out there, because of a lack of information. She wants her daughters involved in the Coalition so they can grow up with the benefit of the education she had growing up.
“When they have kids, will it be scary? It might. Will having this education take a little bit of the fright out of it? I sure hope so!” Ashley asserts that having her eyes wide open to the realities and resources of hemophilia was a great benefit to her as she embarked on having children. See feels everybody ought to have the same opportunity. “If I would have had a son, I’d know how to get factor for him, I would know which HTCs to contact. I’d know what to tell the doctors who had maybe never dealt with hemophilia before. My daughters deserve that knowledge too.”
“It makes me so sad to hear of people who say the first day they ever heard of hemophilia was when they gave birth, or their baby got a vaccination and just bled and bled. I think if we can get that information to people, why on earth wouldn’t we?!”
Ashley complements the Coalition on a recent event where they focused on the importance of learning how to “Tell Your Story” as a vital component of self-advocacy. “I didn’t realize how important it was until I started hearing other people’s stories, Now I know that’s exactly what I want to do. The more I can share about it on social media and get someone to google what hemophilia is, the better community it makes.”
At eight and ten, two of Ashley’s daughters have attended Coalition events. They are very interested in their connection to hemophilia. They sit through presentations with a maturity that has surprised Ashley and are beginning to riddle her with questions about it. “It’s cool to see their brains start going and how these presentations provoke questions even weeks later. It makes their upcoming periods less scary.”
Ashley recently pondered the question about whether after having three daughters and no sons, it was okay for her to keep coming to Coalition events. She wondered if she was taking a seat away from someone else who deserved to be there more than she did. The advice she received is that the up-to-date information was very valuable to her whole family, and the support of the community is something that would be very beneficial for her daughters.
Looking forward, Ashley thinks the Coalition has a unique opportunity to push the envelope further with the mental health aspect of hemophilia. “I would love to talk with other daughters who grew up with a father with hemophilia who struggle with depression,” she says. Ashley’s father’s tragic childhood took a toll on his mental well being. Watching her father suffer physically and mentally took a toll on Ashley’s mental health. The bleeders and the children of bleeders who suffer from depression are only two of several mental health focus groups Ashley thinks would be beneficial to the community.
When asked what advice she would give others, Ashley says, “It’s so important to start learning young. I have no regrets about learning about hemophilia at a young age, and I think it’s important for people with hemophilia, carriers and spouses of carriers to learn as early as possible.” Fortunately, the Coalition for Hemophilia B is here to offer education and support along our journey!