The hidden visible
A disease/disorder is defined as rare when it affects fewer than 5 in 10,000. Currently, WHO has recorded 5,000-8,000 rare diseases, among which 58 are more prevalent in Iran. There are 1 million 200 thousand people with rare diseases in Iran. Experts believe that inheritance and consanguineous marriage are the two major causes of the said diseases.
Most families with rare diseases belong to the lower socioeconomic class of the society. Diagnosis of rare diseases is difficult, time-consuming and very costly. Most of the drugs are imported and high medical costs are considered as one of the the chief hardships of the patients. However, there is no effective treatment approach and the drugs are merely prescribed to prevent the progress of the disease.
Lack of public awareness of the rare diseases and their complications in addition to being ridiculed and rejected by the society are the biggest problems of these patients. Most of the patients are fallen away from the society and have gradually become depressed and unwilling to communicate with others and this is sometimesmore painful than the disease. Lives of these patients is full of pain and suffering and they hope that one day, a cure is found for their pain to live slightly more comfortable. Life expectancy/hope is the most effective medication for them to continue life.