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-Learn About Coagulation Disorders
-What are Bleeding Disorders?
 History of Bleeding Disorders
 Types of Bleeding Disorders
 Types of Bleeds
 Bleeding Disorders and Women
 Caring for the Newly Diagnosed Child
 Psychosocial Issues
-Complications, including Inhibitors
 For Consumers
-For Providers
 The Challenge of Inhibitors
 Why Some Patients Develop Inhibitors
 Measuring Inhibitors
 Prognosis for Inhibitor Patients
-Social and Emotional Concerns
 Discussion Group
 Future Therapies
 What are Clotting Disorders?
 Comprehensive Medical Care - Hemophilia Treatment Centers
 Medical and Scientific Advisory Council
 Financial and Insurance Issues
 HANDI, NHF's Information Resource Center
 Web Links



Social and Emotional Concerns

Both the patient and the family face many challenges with inhibitors. The ongoing financial and emotional struggles associated with hemophilia are intensified for patients with inhibitors and their families. Living at a distance from expert care may also impact personal and familial issues. Many families find themselves living in areas where therapy options require travel or are not available at all.

As inhibitor development often occurs in children, the development of inhibitors often has a psychosocial impact. Adolescence is marked by independence and risk-taking activities, which often creates a dynamic that can be a challenge regarding medical compliance with prescribed therapy. Support from physicians and other professionals are essential.

Financially, the treatment costs associated with inhibitors are high. Hemophilia replacement therapy is very expensive and infusion therapy for inhibitor patients tends to be more expensive. While many insurance companies cover the medical costs, caps can be reached quickly requiring the use of alternative insurance plans and public programs. It is critical for healthcare providers to discuss the cost of treatment with patients and their families and provide appropriate referrals to alternative programs and resources. Hospital social workers and other agencies can also help procure alternative methods of payment.


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