Top 5 priorities for newly diagnosed individuals and families

• Understand the importance of comprehensive care and where to receive it.

• Establish a support network and educate yourself about your bleeding disorder.

• Visit NeedyMeds State Hemophilia Program to learn more about financial assistance for treatment.

• Enroll with MedicAlert for a medical ID bracelet and to register for critical medical information to be communicated to first responders and loved ones in an emergence.

• Become a member of the BDAI Community!

Why comprehensive care is so important

Comprehensive care allows for a full circle of coordinated care and services to patients and families. Patients should be seen by all team members at least yearly (children every six months), and a comprehensive management plan should be communicated to the patient and all treatment personnel. Team members typically include primary care givers such as a

• hematologist

• nurse coordinator

• physiotherapist

• social worker

and may include specialists such as a/an

• rheumatologist

• occupational therapist

• orthopedic surgeon

• physiatrist

• geneticist

• hepatologist

• immunologist

Members of the comprehensive care team assist with administering clotting factor assays, detecting an inhibitor, determining the proper plasma-derived or recombinant clotting factor concentrate, and other supportive care resources. They can also provide coordination and consultation about day-to-day care in personal physicians, which can be particularly important for patients who live a long distance from the nearest hemophilia treatment center.

Communication is Key

Education and communication are imperative to ensure that the needs of the patient are met. The circle of informed people includes patients and family members, other healthcare workers, schools, and the workplace.

To conduct research to further our knowledge and improve the management of bleeding disorders, clinical research is often conducted in collaboration with several treatment centers, especially because the number of patients in each center may be limited.

Documentation of treatments and measurements of long-term outcome, particularly with reference to musculoskeletal function, is very important for proper continued care from all members of your health care team.

Family/support system

Since bleeding disorders are life-long conditions, require expensive treatment, and can be life-threatening, they significantly affect many aspects of family life. It is, therefore, important that parents, spouses, and other family members are educated, supportive, and active participants in all aspects of the patient’s care. The comprehensive care team will have the resources to support family members of a person with a bleeding disorder. This may include identifying resources and strategies to help cope with

• risks and problems of everyday living, particularly with the management of bleeding,

• changes during different stages of the patient’s growth and development,

• issues regarding schooling and employment, and

• risks of another affected child and the options available.

This is accomplished through education and counseling, as well as identifying and using community resources. All family members are encouraged to become involved with the comprehensive care team in order to best meet the needs of the patient.