ABSTRACT
Managing and treating alopecia can be challenging and frustrating for the patient, the patient’s family, and the physician. The lack of available information regarding diagnosis and treatment of the hair or scalp condition and the understanding that medical interventions can be limited and of minor effectiveness often heightens this frustration. While many patients can simply turn to the internet for information, there is relatively little that is guaranteed to be truthful and helpful from a simple search of a medical topic. While dermatologists are one of the best resources that patients have for finding the most current and scientifically correct information on the topic, knowledge should not be restricted to medical issues. Alopecia is more than just a medical condition, and understanding the stressors that affect quality of life are equally significant to helping patients. Affected individuals often experience significant psychological
and social challenges in addition to the biological impact of disease. Depression, anxiety, and suicidal ideation are health issues that can accompany alopecia. People who have alopecia and their family members often experience a variety of feelings and frustrations. Reactions to the disease include the following:
• Loneliness and isolation
• Loss and grief
• Fear that others may find out you have the disease
• Fear that others may find out that you wear a wig
• Sadness and depression
• Guilt or self-blame that you somehow brought the disease on yourself
• Guilt related to how the disease is affecting family members and loved ones
• Frantic in regard to searching for an answer or cure (going to extremes)
• For parents, guilt that they may have genetically contributed to their child’s disease
• For parents, helplessness that they cannot stop the disease or help ease their child’s pain
• For siblings and other family members, shame and anger because the disease has also affected their lives
Patients with alopecia often benefit from counseling and support and find comfort in learning they are not alone. In order to best manage a patient with alopecia, one has to become familiar with the resources available to physicians, patients, and the general public regarding hair loss information and support. Knowing the various services and materials reputable organizations offer and how to access these resources improves patient care and outcomes. In this chapter, alopecia resources are discussed including disease state information, patient education and support, financial assistance for cranial prostheses, and research (Table 22.1).
