For many people living with a bleeding disorder, the hardest challenges aren’t always the ones others can see.
Ashley Ramos knows this reality well. On the surface, she may look like any other person going about her day, but behind the scenes, even routine moments can become difficult.
“There are days when something as normal as being on my period becomes overwhelming,” she shares. “I’ve had moments where I’ve bled through my clothes or had frequent nosebleeds that force me to suddenly leave a classroom or public place.”
These experiences don’t just disrupt daily life; they can feel isolating. When symptoms appear suddenly and without warning, they can bring stress, anxiety, and the need to constantly stay alert in situations others might take for granted.
One of the biggest challenges with bleeding disorders is that many symptoms are not always visible to others, making it harder for people to recognize the seriousness of what someone may be experiencing.
“Because others can’t always see it, it’s sometimes misunderstood or not taken as seriously as it should be,” Ashley explains. “But when proper care is delayed or overlooked, people like me are the ones who face the consequences.”
That gap in understanding can have serious implications. Bleeding disorders require specialized, proactive care, especially before medical procedures. This is something Ashley learned firsthand during a critical experience.
A Turning Point in Her Care
When she underwent a liver biopsy, she took the initiative to advocate for herself, asking whether the proper precautions had been taken. At the time, everything seemed in order. But soon after, something felt wrong.
“Because I have a high pain tolerance, the pain I was feeling internally didn’t immediately raise concern,” she says. “But I was actually bleeding in my liver and stomach.”
The cause was a lack of appropriate treatment before and after the procedure, something that may have been prevented with the right protocols in place.
That experience became a turning point.
It reinforced how vital it is not only for patients to advocate for themselves, but for medical teams to have a deep understanding of bleeding disorders and to take those concerns seriously.
“It taught me that even when you speak up, there are times when you need others to step in and support you,” she reflects. “Awareness and proper medical understanding are so important.”
“For patients with complex conditions like von Willebrand disease, case management is essential,” says Kristina Mori, Nurse Case Manager at CIBD. “Care doesn’t happen in isolation. It requires coordination across providers, careful planning before procedures, and ongoing education to prevent complications.”
Turning Experience Into Advocacy
Over time, Ashley has turned her experiences into a source of strength. Advocacy is no longer just something she does. It’s part of who she is.
“My journey has shaped my day-to-day life in many ways,” she says. “I’ve learned how to speak up for myself, ask questions, and educate the people around me.”
For those who have witnessed Ashley’s journey firsthand, her growth and resilience have been deeply meaningful.
“It has been an honor working with Ashley over the years,” says Khanh Pham, Clinic Supervisor at CIBD. “I’ve watched her navigate the complexities of von Willebrand disease from a young age. She has become fiercely attuned to herself, reading the quiet symptoms that are easy to miss, and always finding her voice when needed.”
Even when it’s difficult, she continues to use her voice not just for herself, but for others who may be navigating similar challenges.
The Power of Support and Comprehensive Care
And through it all, one thing has made a meaningful difference: having the right comprehensive care team.
“Despite everything, I am incredibly grateful to have a team of doctors who truly care about me and support me,” she shares. “Having that kind of medical team gives me hope.”
Kristina shares, “Ashley’s journey reflects what is possible when patient advocacy and clinical support come together. She brings courage and awareness; our role is to reinforce that with education, preparation, and proactive care planning.”
Khanh also recognizes the strength and community Ashley has fostered around her.
“Ashley has built a strong support system of family, friends, and collaborative relationships with her comprehensive care team at CIBD. Despite the challenges posed by her bleeding disorder, Ashley has maintained an unwavering commitment not only to her own health, but to advocating for other women with bleeding disorders.”
Her story is a powerful reminder that bleeding disorders are often invisible, but their impact is not. With awareness, proper care, and strong advocacy, patients like Ashley can navigate these challenges with greater safety, confidence, and support.