Community Is the Bonus to Hemophilia

Ashley is somewhat new to the hemophilia community but has already worn many hats including mother to a child with hemophilia, carrier of hemophilia, volunteer, and most recently, executive director of a state chapter. Even though her uncle had hemophilia, she says she had limited experience with the disorder until her nephew was born. “My family wasn’t prepared for someone to be diagnosed with hemophilia again. I guess we thought since my mom didn’t have any kids with hemophilia, it just ended there.  Then I realized I could have this too; it’s something I should think about when I have kids.”   

​Ashley was tested when she was pregnant for her first son, Leo, and learned she is a carrier. While Leo does not have hemophilia, her youngest son, Max, does. The diagnosis process was frustrating for her each time they tested her sons.  “It’s such a rare disease that people aren’t familiar with testing for it. Both times the hospital botched the test and the baby had to go back in for testing.”  It was difficult to sit by and watch her babies endure multiple painful needle sticks and maintain patience when she desperately sought out answers.

“With Max, finding out was hard, even though I knew it was a possibility. Nothing really prepares you for hearing those words.”  Ashley’s biggest fear was that they would never get to have a normal life. “It felt so overwhelming thinking that this would take over. I was scared that it would take over our life.”  The first few days after receiving his diagnosis were the hardest and were clouded by sadness.  She could not stop herself from comparing her boys and how a normal part of childhood, like bumping your head, would have such drastically different implications for Max.  However, Ashley knew she could not be sad forever.  “I told myself it could be worse.  This might present some challenges, but we’ll get through this as a family.”

Max suffered his first bleed when he was 8 months old.  Ashley noticed that he would not crawl and would only reach for things.  She knew something was wrong when he began to cry when she held his ankle while changing his diaper. She immediately called her HTC, The Louisiana Center for Bleeding and Clotting Disorders at Tulane; an ultrasound revealed an ankle bleed. Max began prophy treatment, which meant weekly travel to the HTC for infusions. When Max developed inhibitors, the need for a port became imminent.  “Port surgery was stressful.  Putting him to sleep was stressful and knowing he’d have a cut and permanent scar.  When you have a child with hemophilia, surgery is just scary.”

Max’s port surgery took place one week before his first birthday, and Ashley expected to be in the hospital for 2 to 3 days.  However, due to uncontrolled bleeding at his port site, he was in the hospital for 10 days.  “That was scary.  In the beginning, when it wouldn’t stop bleeding, I could tell the doctors and nurses were worried.  It scared me. I was worrying about my other son who was worried about his brother. All of the unknowns were scary.” Their hospital stay ran so long that Max celebrated his first birthday in the hospital.

The hospital staff was very supportive and brought presents and a cupcake for Max.  However, Ashley’s worries about having a normal life with hemophilia resurfaced.  “I just cried.  I was trying to get myself together, but it was so overwhelming to be there for his birthday. I wondered if every birthday was going to be spent in the hospital and if every celebration would be tainted.”  

The bleeding eventually stopped.  Max’s surgery wounds healed, and Ashley learned to do his infusions.  The bruises that covered Max’s tiny body as a toddler were no more and with regular prophy treatments his medicine was finally doing its job. They eventually developed a routine with infusions and his hemophilia suddenly “wasn’t that big of a deal.”  Ashley started to learn what required a trip to the hospital and what could be treated at home with factor. “Technology was great because we could text photos to the nurses and they’d tell me if I needed to go to the hospital. After his port, into his second year, it just became a thing that’s a little different from what the ‘normal’ family has to deal with.  It wasn’t a big deal.”

Ashley largely contributes overcoming her “irrational belief that hemophilia would be horrible” and her acceptance of it to her support system.  “I can honestly say that I’ve never felt alone” in dealing with hemophilia.  From her husband and her sister to her parents and her in-laws, she has always had someone by her side to walk with her through the process. “I knew I couldn’t just sit around and feel sorry for myself.  It was okay to feel frustrated or afraid for a while and to process grief, but I couldn’t just sit around moping.  I surrounded myself with people who could help me.  Time and experience show you what it’s really going to be like, and it hasn’t taken over my life.  Life is pretty normal. “

Her understanding of the importance of resources, however, does not just stem from her experience with bleeding disorders. After four years of teaching sixth-grade English, Ashley went back to school and earned a master’s degree in school counseling. She then worked for five years as an elementary school counselor before taking a job with a nonprofit that worked with students at risk for drugs, alcohol, and violence, as well as their teachers and parents.  This job enabled her to fine-tune abilities such as teaching coping skills and suicide prevention, skills that will be quite valuable as a leader of the bleeding disorders community. 

Ashley recognized early on that getting involved in the hemophilia community would serve well to connect her with families with similar experiences.  She reached out to Hope Charities as well as the Louisiana Hemophilia Foundation (LHF).  She attended advocacy days in Washington D.C. with HFA and in Louisiana with LHF.  She joined the board of directors of LHF about 1 ½ years ago and eventually became their treasurer.  In January 2021, Ashley embarked on a new journey as the executive director of LHF.  “I just knew that I wanted to take the reins and take LHF where I knew it had the potential to go.”

Ashley’s passion lies with connecting families, particularly moms “because those are the people I relate to the most.”  She encourages everyone in the hemophilia community to rely on one another for support.  “Get connected with the community because someone else is going through what you’re going through, and someone can help you.  The community is the bonus to having hemophilia; you get an extra family that you didn’t have before. It’s pretty cool.  Take advantage of it and don’t ever feel like you’re alone.  Get involved.  We always need volunteers, and it feels good to be part of an organization that is helping your family and people like you.  You’ll notice a difference; it brings joy.”
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Being connected to others is a huge advantage for those who have cultivated these relationships within the bleeding disorders community. Resources play a significant role in preventing and escaping crises. When turning to others for support, we often come full circle and find ourselves in a position of offering support to someone else along the way. There is no firm line that defines the start of leadership, but every person who reaches out to help, uses their voice for the greater good, or tries to bring about change is exercising leadership on some level. Ashley’s achievements prove that none of this can be done without getting connected.