Top 5 Priorities for Newly Diagnosed Families 

  1. Understand the importance of Comprehensive Care and where to receive it.
  2.  Register in the State Hemophilia Program and learn more about how to pay for the disorder.
  3.  Enroll with Medic Alert to relay vital medical information to emergency personnel.
  4.  Establish a support network and educate yourself about the disorder.
  5.  Become a member of the BDAI Community!    

 

To contact Bleeding Disorders Alliance Illinois, email info@bdai.org or call our office at 312-427-1495                                  

Guidelines for the Management of Bleeding Disorders 
Keys to improvement of health and quality of life include:
 

Prevention of bleedingLong-term management of joint and muscle damage and other complications of bleedingManagement of complications from treatment including:

- Inhibitor development

- Viral infection(s) transmitted through blood products requiring long-term management

 
 

Comprehensive Care


These management goals are best met by a team of healthcare professionals providing comprehensive care. Hemophilia patients should ideally be managed in a comprehensive care center staffed by the following core team members:

Hematologist(s)

Nurse coordinator

Physiotherapist

Social worker


 

These staff members should have expertise and experience in treating bleeding disorders. The core team members should have access to the following support resources:

A coagulation laboratory capable of clotting factor assays and inhibitor detection

Appropriate clotting factor concentrates, either plasma derived or recombinant

If clotting factor concentrates are not available, a blood bank with expertise in preparing fresh frozen plasma (FFP) and cryoprecipitate.

 

Specialists should be available as consultants, as needed, and should include, among others, the following:

Orthopedic surgeon

Physiatrist/rheumatologist

Occupational therapist

Dentist

Geneticist

Hepatologist

Infectious disease specialist

Immunologist


 

In centers where there are many patients with chronic musculoskeletal problems from frequent bleeding, an orthopedic surgeon should be a core team member. Additional specialists could also be members of the core team, depending on the needs of the patient population served.

Functions of comprehensive care program

 

To provide or coordinate care and services to patients and family.

Patients should be seen by all team members at least yearly (children every 6 months) and a comprehensive management plan should be communicated to the patient and all treatment personnel.

-Smaller centers and personal physicians can provide day-to-day care in coordination and consultation with the comprehensive care center, particularly for patients who live a long distance from the nearest hemophilia treatment center.


 

Communication is Key


 
 

The Family


Since hemophilia is a lifelong condition, requires expensive treatment, and can be life threatening, it significantly affects 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 should have the resources to support family members of a person with hemophilia. This may include identifying resources and strategies to help cope with

 

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.

 

 

 

 

 

 

 


Advertisment

If you are interested in advertising on BDAI's website please call 312-427-1495