Rare diseases are the diseases which affects only small population as compared to general population. One of such rare diseases is Prurigo nodularis, an uncommon skin disorder which causes numerous persistent, intensely pruritic nodules on arms and legs, and may also develop on the trunk, face, neck, and even scalp. Prurigo nodularis results from chronic mechanical irritation of the skin or intractable pruritis that is difficult to treat. The disease shows female predominance and also commonly seen in HIV-infected individuals or sometimes associated with hepatitis C virus. In prurigo nodularis, extremely pruritic nodules are formed before the itching begins and can only be alleviated by steroids.
Factors Affecting the Treatment for Prurigo Nodularis
Rare diseases like prurigo nodularis is very difficult to treat and diagnose as many doctors are not familiar with every one of the thousands of rare conditions. The patient-physician relationship may not fit with the traditional assumptions of medical care. Many healthcare professionals lack expertise for rare diseases which often results into improper treatment coupled with psychological challenges and greater geographical distances. Due to the absence of expertise and low prevalence of diseases like prurigo nodularis, sometimes patients are forced to become more knowledgeable about their disease.
Due to poor knowledge of prurigo nodularis, physicians cannot act as a technical experts that limits the understanding of the disease, therapeutic options, and appropriate healthcare provision. Furthermore, rarity in the occurrence of such diseases puts the patient’s life at risk which also includes enormous wastage, delays, various medical consultations, and inappropriate and even harmful prescriptions of drugs and treatments. As there are limited information and knowledge about the disease, accurate diagnosis and treatment are often delayed. Hence, only some of the symptoms of prurigo nodularis could be recognized and treated.
Furthermore, emergency units are not able to encounter or treat prurigo nodularis due to the absence of correct diagnosis. As drugs have been developed for small population, they are not commercially attainable without economic incentives and thereby resulting into ineffective treatment. Moreover, scarcity of specific research methodologies remains a major challenge for the development of drugs of prurigo nodularis treatment. However, in the recent years, patient and families of patients with rare diseases have created various organization to improve or advance the research and treatment for diseases like prurigo nodularis. Each new case or patients of a rare disease also provides information and evidence which are useful for development of medication and treatments.
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