What does “doing well” look like for a bleeding disorder? Bleed counts certainly matter, but they don’t tell you what those bleeds mean to the person experiencing them. The definition of success really depends on the individual.
“I’m surprised when people tell me that they experience bleeding every month but would say that it’s no problem,” explains Lucy Ramirez, MSW, LCSW, a social worker in the hemophilia and thrombophilia care center at Rush University Medical Center in Chicago. “While other people might have a spontaneous nosebleed during a meeting at work, and that is one bleed too many for them.”
“Doing Well” Looks Different for Everyone
The long-term relationships that providers at hemophilia treatment centers (HTCs) develop with patients can reveal signs of how people are doing that don’t necessarily show up in a bleed log.
“I can tell when the way patients are relating to me is different,” Ramirez says. “I take it beyond just, ‘Have you had any bleeds?’ I ask them, ‘Are you OK? Is there something you’re not happy about?’ They could just be having a bad day. But sometimes they are having significant struggles.”
Other signs can be more apparent in a person’s daily life. Stopping participation in team sports, missing school, having problems with an employer because of time away, or finding exercise painful may indicate that a bleeding disorder is interfering with life.
The opposite can also be telling. When people are engaged at work or school and pursuing interests and activities, that can demonstrate the bleeding disorder is well managed because it isn’t getting in the way of day-to-day functioning.
Pain can complicate the situation, particularly for older people who experienced joint damage before prophylaxis was widely available, Ramirez says. Chronic pain can affect quality of life even when bleeding itself is well controlled.
Bring the Whole Picture to Your Care Team
Because treatment success is personal, you should feel comfortable telling your care team what is and isn’t working for you. Providers can best guide your treatment when they have the whole picture of your health.
“If you’re not quite satisfied with the way things are going or wondering if they could potentially be easier or better for you, you should always be willing to bring those questions to your team,” Ramirez says.
“You should not feel that we are the ones dictating care,” she says. “These are shared decisions.”
Keeping a record of bleeding episodes and treatments can paint part of that picture by showing how effectively you’re managing your bleeding. This information is also helpful in showing whether a treatment is not optimal and a stronger case could be made for insurance authorization of a new treatment.
That said, these records won’t necessarily reveal whether you are finding treatment difficult to manage or avoiding activities because of your bleeding disorder. That’s where communication is especially valuable.
Ramirez says it’s important for providers to meet you where you are and not to make assumptions about how well you’re doing. Similarly, you shouldn’t assume that your care team knows you’re managing your condition well simply because you haven’t reported a problem.
“We might not think to offer you something because we think you’re pretty satisfied with where you’re at,” she says.
When it comes to communicating with your HTC care team, Ramirez says, there are no bad questions or suggestions.
It’s OK to Want Things to Be Better
When asked how you’ve been doing, you may feel pressure to give a quick thumbs-up. But living with a bleeding disorder isn’t always easy, even when treatment is working well, and there is no need to minimize what’s difficult.
“It can seem like people always have to meet an expectation of being the perfect patient and give us the same report: ‘Things are going well,’” Ramirez says. “I want you to feel comfortable being honest with me about what’s going on in your life and knowing that there is no judgment.”
Even when a treatment seems to be effective, there could be an option out there that’s better. Maybe your bleeding disorder is the subject of a clinical trial that you would qualify for. Or if a trial isn’t available, asking about it might be what paves the way for a future study.
Community Voices in Research (CVR), the National Bleeding Disorders Foundation’s community-powered registry, gives people another opportunity to share how bleeding disorders are affecting their lives. All information reported through CVR is confidential and deidentified and aimed at helping researchers improve clinical outcomes and quality of life.
Ultimately, treatment success for providers and researchers is the same as for patients.
“We want what you want,” Ramirez says, “which is the best possible outcome — to have fewer bleeds, to have the quality of life that you want, and for you to live with the bleeding disorder but not have it define your life.”