What Is Hemophilia?
- bleeding disorder;
- blood does not clot;
- one in 10,000 people;
- patients bleed easily;
- three forms: A, B, and C;
- A: deficiency in factor VIII;
- B: deficiency in factor IX;
- C: deficiency in factor XI (Kahn, 2016).
Hemophilia is a life-threatening disease in which blood does not clot appropriately (Kahn, 2016). Patients can have spontaneous bleeding that is rather hard to stop.
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- excessive bleeding;
- blood in the stool;
- deep bruises;
- big bruises;
- frequent nosebleeds;
- joint pain;
- tight joints;
- blood in the urine (Kahn, 2016).
The first symptoms may develop at the age of two (Kahn, 2016). In children, symptoms are quite irritable. A person may bleed for no reason at all or as a result of trauma.
- joint damage;
- chronic swelling;
- joint deformity;
- viral infection;
- depression (“Complications of having,” 2017).
The most usual complication caused by hemophilia is problems with joints (“Complications of having,” 2017). Other complications include the development of viral infections and serious psychological disorders associated with the health condition.
- screening tests;
- clotting factor tests;
- complete blood count (CBC);
- CBC: hemoglobin amount;
- activated partial thromboplastin time test (APTT);
- APTT: how long it takes to clot;
- APTT: clotting ability of factors VIII, IX, XI, and XII;
- prothrombin time test;
- fibrinogen test (“Hemophilia,” 2017).
There is a variety of tests to check whether a person has hemophilia and what type he or she has. With the help of these tests, doctors can create the most suitable plan of treatment.
Hemophilia Health Promotion
- wellness programs;
- education for newly diagnosed people;
- the transition from teen to young adult age;
- “steps for living”;
- prevention programs;
- maintaining a healthy weight;
- vaccinations against hepatitis;
- emergency preparedness (“Hemophilia,” 2017).
National Hemophilia Foundation promotes a variety of promotional activities to help families in which someone suffers from hemophilia. Special wellness programs are created, and advice is given to families at each period of patients’ life (“Hemophilia,” 2017).
- quality care is needed;
- comprehensive treatment centers;
- replacement of blood clotting factor;
- plasma-derived factor concentrates;
- recombinant factor concentrates;
- Desmopressin Acetate;
- Epsilon Amino Caproic Acid;
- Cryoprecipitate (“Hemophilia,” 2017).
There are many treatment methods available. The most common treatment is replacing the deficient blood clotting factor by specially prepared concentrates (“Hemophilia,” 2017).
- help patients to cope with their condition;
- help the family to understand their sick relative better;
- carried out in health centers;
- cognitive therapy;
- behavioral therapy;
- systemic therapy;
- psychodynamic psychotherapy;
- psycho-education (Cassis, Emiliani, Pasi, Palareti, & Iorio, 2012).
Psychological interventions are no less crucial than informing families about the physical specifications of the disease (Cassis et al., 2012). With the help of such interventions, families learn how to support their children or siblings.
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- education enhances patient care;
- education accommodates skills;
- patients learn to recognize symptoms;
- patients can identify complications;
- families learn about psychological problems;
- families are taught to treat bleeding episodes;
- instruction about prevention;
- family-centered approach (“Hemophilia,” 2017).
Local hemophilia centers and other facilities organize education for families whose members have hemophilia. With the help of such educational programs, specialists teach the population about the most common ways of preventing injuries and managing the symptoms of hemophilia (“Hemophilia,” 2017).
National Resources: Hemophilia and AIDS/HIV Network for the Dissemination of Information (HANDI)
- started in 1991;
- with support from National Hemophilia Foundation;
- answers questions;
- gives advice;
- provides educational materials;
- explains treatment complications;
- deals with psychosocial issues;
- articles and videos (“HANDI,” 2017).
HANDI was initiated by the National Hemophilia Foundation (“HANDI,” 2017). Its major aim is to provide support and guidance for people suffering from hemophilia and their family members.
Local Resources: Central New York Bleeding Disorders Association (CNYBDA)
- charity organization;
- for people with blood disorders;
- promotes awareness;
- facilitates support;
- promotes self-care;
- establishes research;
- promotes proper treatment;
- facilitates education (“Central New York,” 2017).
CNYBDA aims at helping people with hemophilia to learn more about their health condition. Moreover, the association helps people by free educational materials and arranges a variety of promotional campaigns (“Central New York,” 2017).
Cassis, F., Emiliani, F., Pasi, J., Palareti, L., & Iorio, A. (2012). Psychological interventions for people with hemophilia (Protocol). Web.
Central New York Bleeding Disorders Association. (2017). Web.
Complications of having a bleeding disorder. (2017). Web.
HANDI, NHF’s information resource center. (2017). Web.
Hemophilia. (2017). Web.
Kahn, A. (2016). Hemophilia. Healthline. Web.