Oprah Winfrey may have coined the self-improvement motto, “Live your best life,” but it caught on because it’s something almost everyone instinctively wants.
And something almost everyone needs some help figuring out how to do — especially when it comes to life’s more challenging and complex aspects.
Providing that help to people living with bleeding disorders, broadly put, is what the network of about 140 hemophilia treatment centers in the U.S. is built for. They specialize in comprehensive medical care instead of simply treating a disease.
“We’re not looking solely at whether you’re taking your medication or having any bleeds,” says Tracey Gaslin, a nurse practitioner at University of Louisville Health. “We’re looking at overall well-being. Medication is just the physical aspect of the work. What we really want to look at is overall physical, mental, emotional, social, spiritual, and environmental health.”
Statistics demonstrate the effectiveness of that approach. People with hemophilia who receive care at a treatment center are 40% less likely to die from, or be hospitalized because of, a disorder-related complication than those who don’t receive care at an HTC, according to studies by the U.S. Centers for Disease Control and Prevention.
Advanced Treatments, Community Connections, Financial Support
“An HTC is the only place to truly get holistic, comprehensive services,” Gaslin explains. Without that connection, people with bleeding disorders may miss the latest advances in treatment and lack access to financial support, educational offerings, and the opportunity to build a community with people in similar situations.
At a hemophilia treatment center, people with bleeding disorders have access to a care team that may include:
- Hematologists: Bleeding disorder specialists.
- Pediatricians: Doctors trained to care for infants, young children, and teenagers.
- Nurses: Medical specialists trained in bleeding disorders care. The nurse is probably the person you will see most frequently.
- Social Workers: Specialists who assist you with the issues of daily living, such as adjusting to living with a bleeding disorder, and locating resources (e.g., insurance, transportation, housing).
- Physical Therapists: Specialists in activity, exercise, and rehabilitation.
- Orthopedists: Specialists in bone and joint disorders.
- Dentists: Specialists in disorders of the teeth and gums who are experts in treating people with oral bleeding problems.
The most important person in the mix, however, is the person seeking treatment, Gaslin says: “We don’t manage patients. We partner with patients.”
The staffers on a care team lay out options including “ways we can support you, ways we can provide education about your disorder, and ways we can connect you with the community,” she adds. “You get to look at the buffet, then pick and choose what works best for your lived experience.”
While each person’s needs are unique, having access to a full array of support is important because bleeding disorders touch on almost every facet of life. Living with one isn’t comparable to taking a pill once a day to manage high blood pressure, for example.
Steps to Help Make the Most of Your Visit
“Bleeding disorders affect decisions you make about your employment and career, what you do with your leisure time as well as how you navigate life with parental involvement and, later, without parental involvement,” Gaslin says. “There are so many moving pieces, and if we want folks to achieve a normal developmental trajectory, we need to give them the tools and the resources to do so.”
Since the comparatively limited number of hemophilia treatment centers means they may be farther away for some patients than a local hospital or primary care physician’s office, making the most of each visit is important. Steps that can help include:
- Keeping records: Be ready to describe how your current treatments are working, including examples of improvements or problems. A diary can help with that, some providers say. You may also want to make a list of questions to ask.
- Bringing the right people: When parents are scheduling an appointment for a child, it’s important to consider who should attend. If a grandparent or other relative is a primary caregiver, that person may be able to contribute valuable observations or questions.
- Being honest about progress: Many people are inclined to downplay problems when meeting with a health care provider and to overstate how closely they followed the provider’s past recommendations. Doing those things hinders the ability of providers to help, since they’re making assessments and suggestions based on faulty information.
It’s interesting how the relationship between health care providers and patients correlates with the relationship between parents and children,” Gaslin says. “Children want their parents to be proud of them, and frequently, when patients have an appointment with a health care provider, they want the provider to say, ‘Great job. You followed the treatment plan I laid out for you.’ But that misses the point of whether the treatment plan was really in the best interests of the patient.”
Providers may be experts in treatment options, she explains, but they don’t know the workings of their patients’ daily lives.
Since effective treatment requires understanding both, “we really need honest and truthful conversation,” Gaslin adds. “Patients have to be able to come in and say, ‘I know you recommended this treatment or these exercises with a physical therapist, but I didn’t do them and this is why.’”
Patients need to be told that it’s OK that they made the decisions they believed were best for them, she adds.
“If we’re recommending treatments that aren’t really working for them, we need to let that go, to adapt and say, ‘OK. Here are other options,’ Gaslin says. “We’re very fortunate right now to have many good medications and options for treatment that are helping people with bleeding disorders have a full, normal life expectancy.”