The Comprehensive Hemophilia and Bleeding Disorders Treatment Program at Johns Hopkins All Children’s Hospital provides expert care for children of all ages, from infants to age 21.
When a child has hemophilia or another bleeding disorder, it can impact his or her life in a number of ways, from chronic health problems such as joint disease and anemia to quality of life matters such as such as missing school and work days. But with proper management, patients with hemophilia and other bleeding disorders can lead healthy lives.
The Comprehensive Hemophilia and Bleeding Disorders Treatment Program at Johns Hopkins All Children’s Hospital provides family-centered, compassionate care to patients with a bleeding disorder. Our patients and their families receive comprehensive care and services to address all aspects of life impacted by a bleeding disorder.
We specialize in caring for infants, children, adolescents and young adults through age 21 and work closely with our patients to help them transition smoothly to adult care when they come of age.
As a federally funded program, we are recognized by organizations including the Centers for Disease Control and Prevention and the National Hemophilia Foundation as a model of care that best meets the needs of our patients.
Patients with bleeding disorders who receive care through a designated Hemophilia Treatment Program like the one at Johns Hopkins All Children’s have a significantly reduced risk of bleeding complications, are less likely to be hospitalized secondary to bleeding complications and are more likely to lead normal, uninterrupted lives.
Patients in our program receive care from a team of specialists trained in bleeding disorders, with patients and their families as core members of the care team. We provide seamless coordination of inpatient or emergency care when needed, and guide you and your child through services like integrated laboratory, medical imaging and pharmacy services.
The disorders we treat in the Hemophilia and Bleeding Disorders Treatment Program include:
- Hemophilia A (Factor VIII deficiency) and Hemophilia B (Factor IX deficiency)
- Von Willebrand disease
- Platelet function disorders including Glanzmann thrombasthenia, Bernard-Soulier syndrome, and May-Hegglin anomaly
- Rare bleeding disorders (Factor I, II, V, VII, XI, XIII deficiencies)
- Hereditary hemorrhagic telangiectasia (not a bleeding disorder but a vascular disorder with bleeding complications)
Services in the Comprehensive Hemophilia & Bleeding Disorders Treatment Program
In the program, patients will receive expert care from physicians and clinical team members in a number of specialties who work in tandem to address our patients’ individual care needs. Services include:
Pediatric Hematology Medical Care
Your Johns Hopkins All Children’s physician leads your care team and works in collaboration with the
team of specialists. In addition to bleeding disorder testing and creating personalized care plans for each patient, your team will coordinate surgical treatments, Emergency Center and inpatient care as needed.
Our patients and their families have access to physician care and consultation 24 hours a day, and can expect care and treatment that respects their cultural and language preferences. We also bring care closer to home with clinics in our Outpatient Care Centers in St. Petersburg, Tampa, Lakeland and Fort Myers.
Our clinical nursing team provides comprehensive care during and between appointments and will help coordinate care for infusion services as well as with other providers and specialists as needed. Between appointments, you’ll always be able to reach our nursing team over the phone to talk through any patient and family health questions or care needs that arise.
We provide hands-on education for our patients and parents on how to properly manage your child’s treatment schedule, and we provide support for concerns like travel planning, emergency preparedness, school communication, training of school nurses, education for daycare facilities and camps, or other situations that may be impacted by a bleeding disorder. Our team is available to visit patients’ schools as needed to ensure your child is appropriately integrated into the classroom.
Because bleeding disorders can lead to chronic issues like joint pain, we support our patients’ long-term quality of life with specialized physical therapy support. This helps our patients proactively protect their joints from the negative impact of bleeds, identify the indicators of bleeds and complications earlier, and promptly rehabilitate muscles and joints affected by the bleeding disorder.
Our physical therapists coach patients on ways to strengthen the body to help prevent bleeds, and guide them through joint and muscle-friendly exercise routines. We assess patients’ joint and muscle health and risk for bleeds, plan and support management of joints and muscles experiencing bleeds, and plan and support rehabilitation for patients who experience bleeds.
We also assess patients’ needs for adaptive equipment, foot support and orthotics, and coordinate care and consultation services with other specialists as needed.
Living with a chronic disorder can be stressful and present unique challenges in the daily lives of our patients and their families. Challenges can include barriers in school or at work, restrictions in activity due to a bleeding disorder, financial burdens, or uncertainties for parents in balancing a normal childhood experience with proactively preventing bleeding complications.
Our social workers are here to help you and your child with these and other challenges. We offer patients and families emotional support, provide individual and family counseling, connect them with appropriate community resources, and support coordination and collaboration with care and community service providers. We’re here to help you navigate all aspects of your child’s care.
We work with parents on age-appropriate ways to help their child learn and develop their own good health management skills. We also provide advocacy and navigation of the insurance and social service systems, and facilitate and support aspects such as the Family Medical Leave Act, disability and guardianship, as well as school outreach and advocacy with individualized education programs (IEP), 504 plans for providing support and appropriate accommodations. Our team is available to visit a patient’s school as needed to ensure your child is appropriately integrated into the classroom.
Specialty Pharmacy Care
The Johns Hopkins All Children’s Pharmacy Program is integrated into our medical services.
We offer expert, cost-effective patient care and ongoing support, including cost-contained clotting factor concentrate and supplies, assay management, 24-hour access, and prompt and timely delivery of products.
You have a right to choice of pharmacy services to manage a bleeding disorder. Our team supports your right of choice and will assist you in making an informed decision.
The pharmacy program provides savings to you and your health insurance plan, supports the services available through the Hemophilia and Bleeding Disorders Treatment Program, and supports many important clinical services available to you and your family.
Access to Studies and Clinical Trials
Clinical studies have the potential to help advance the care of individuals with bleeding disorders. Patients in the Hemophilia and Bleeding Disorders Treatment Program have access to a variety of studies and clinical trials, depending on eligibility and the requirements of the particular study or trial.
In some cases, patients may have access to new treatments that are not available to patients who are not participating in the study. Your physician can discuss with you what studies or clinical trials your child may be eligible for. Participation in studies or trials is entirely voluntary.
Genetic testing serves several functions, including allowing us to determine if a person is a carrier of hemophilia or a bleeding disorder, identify potentially affected infants, and accurately educate patients and families on how a bleeding disorder may impact their lives. Genetic testing may also improve the ability to predict whether a patient is at-risk for certain complications, including the development of inhibitors that affect that ability of infused clotting factors to stop a bleed.
Patients with a bleeding disorder typically require specialized dental health services to mitigate the risks of bleeding during routine dental work. We provide dental hygiene evaluation and counseling, and coordinate dental care and ongoing consultation services. Our team facilitates referrals to dentists with experience caring for patients with a bleeding disorder.
A pediatric orthopaedist is available for consultation for any patient experiencing joint pain or problems as a result of bleeding into the joints. Our orthopaedist works with our hematologist to determine when surgical treatment is necessary for a patient experiencing bleeding issues.
As children grow older and start thinking about their futures, preparing for adult medical care is just as important as thinking about careers and education, financial independence, and any other aspect of entering adulthood.
We provide expert care for adolescents, teens and young adult patients in preparing them for adult care. With our transition care model, we help patients from age 12-21 grow as full participants in their treatment plans. When patients turn 18, we support them in developing a plan for transition to adult care, with the coaching of parents and the support of their entire care team, so they’re fully prepared to be treated by an adult bleeding specialist at age 21.
The Menorrhagia Clinic diagnoses and treats patients with excessive menstrual bleeding and blood disorders. Our multidisciplinary approach includes a hematologist specializing in bleeding disorders, as well as an adolescent medicine specialist, a nurse and a social worker all specializing in the care of patients with bleeding disorders.
Our clinic locations
Johns Hopkins All Children’s Outpatient Care, St. Petersburg (main campus)
Johns Hopkins All Children’s Outpatient Care, Fort Myers
Johns Hopkins All Children’s Outpatient Care, Lakeland
Johns Hopkins All Children’s Outpatient Care, Tampa
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