Hemophilia and Bleeding Disorders, Cancer and Blood Disorders Institute at Johns Hopkins All Children's
The Comprehensive Hemophilia and Bleeding Disorders Treatment Center 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 other bleeding disorders, it can impact his or her quality of life in a number of ways, such as missing school, extracurricular activities or work. As a designated Hemophilia Treatment Program, our patients have a significantly reduced risk of bleeding complications and are less likely to be hospitalized secondary to bleeding complications. With proper management, they can lead healthy, uninterrupted lives.
Hemophilia and Bleeding Disorders Treatment
We provide compassionate care to our patients and their families. They receive comprehensive care and services to address all aspects of their life impacted by hemophilia or a bleeding disorder.
We specialize in caring for infants, children, adolescents and young adults through age 21, working closely with them to transition smoothly to adult care.
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 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 (HHT)
- Factor X deficiency
- Ehlers-Danlos syndrome
- Hermansky-Pudlak syndrome
- Other coagulation disorders.
As a federally funded program, we are recognized by the Centers for Disease Control and Prevention and the National Hemophilia Foundation. Patients receive expert care from physicians and clinical team members in a number of specialties who work in tandem to address individual patients’ needs.
Pediatric Hematology Medical Care
Your Johns Hopkins All Children’s physician leads your care team and works in collaboration with a 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. 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. They coordinate care for infusion services as well as with other providers and specialists as needed. Between appointments, you’ll always be able to reach the nursing team with 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. We also provide support for concerns, such as:
- Travel planning
- Emergency preparedness
- School communication
- Training of school nurses
- Education for daycare facilities and camps
- 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, such as 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, early identification of bleeds and complications, and promptly rehabilitate muscles and joints.
Our physical therapists 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. They coach patients on ways to strengthen the body and guide them through joint and muscle-friendly exercise routines.
We also assess patients’ needs for adaptive equipment, foot support and orthotics, and coordinate care and consultation services with other specialists.
Living with a chronic disorder can be stressful. It presents unique challenges in the daily lives of our patients and their families:
- Barriers at school or work
- Restrictions in activity
- Financial burdens
- Uncertainties for balancing a normal childhood experience
We work with parents on age-appropriate ways to help their child learn and develop their own health management skills. We’re here to help you navigate all aspects of your child’s care.
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 also help you navigate the insurance and social service systems to facilitate and support:
- Family Medical Leave Act (FMLA)
- Disability and guardianship
- School outreach
- Advocacy with Individualized Education Program (IEP)
- 504 plans
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.
The pharmacy program provides savings to you and your health insurance plan, supports the services available through the Hemophilia and Bleeding Disorders Treatment Center, and supports many important clinical services available to you and your family.
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.
Access to Studies and Clinical Trials
Patients in the Hemophilia and Bleeding Disorders Treatment Center have access to a variety of studies and clinical trials, depending on eligibility and requirements. Clinical trials and studies have the potential to advance the care of children with bleeding disorders.
In some cases, patients may have access to new treatments that are not available to all patients. Participation in studies or trials is entirely voluntary, and your physician can discuss the clinical trials your child may be eligible for with you.
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. Transition means a process of change, learning and adapting to a different stage of life. This process evolves over many years and, in the context of hemophilia, culminates in the successful learning of the roles and responsibilities of the adult patient.
We provide expert care for adolescents, teens and young adult patients in preparing them for adult care. With our transition care model, we start the transition process at the age of 12 years when we discuss the center’s transition to adult care policy.
Between the ages of 13 and 17, we continue to teach the roles and responsibilities expected of the independent adult. When patients turn 18, we discuss with them information about privacy and consent. At the age of 18, we also 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.
Young Women Bleeding Disorder Clinic
The Young Women Bleeding Disorder 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.
Resources for Patients and Families
Children’s Cancer Center
National Organization for Rare Disorders
Patient Advocate Network
National Hemophilia Foundation
The Assistance Fund
Hemophilia Federation of America
Advocacy, Legal Assistance and Education
Hemophilia & Bleeding Disorders Treatment Center Contact Us or Request an Appointment
For more information or to make an appointment, please give us a call at the phone number below. We serve families in the Tampa Bay area and beyond.