Epidermolysis bullosa

The diagnosis of a rare disease like epidermolysis bullosa (EB) affects not only the individual but also has significant implications for the family and social dynamics. This is a chronic condition, and the additional economic burden can greatly impact the family’s finances. This topic will be discussed in detail in subsequent chapters. 

Social assistance available to EB patients is similar to that provided for other cases of dependency and disability. However, it is crucial to seek professional guidance in navigating the social services landscape to understand the specific resources available for each situation. Additionally, having home care support from nursing professionals, particularly in the first months of life, is highly recommended. 

The availability of financial aid and benefits depends on the official recognition of disability and/or dependency by the authorities. Obtaining this recognition can be challenging due to widespread ignorance about the disease, and accessing economic benefits is often difficult. It's important to note that not all autonomous communities in Spain offer the same resources and benefits; in all cases, the process is lengthy and laborious. Therefore, seeking professional advice from experts in the field is essential, and families should persistently advocate for their needs to ensure they receive appropriate responses from authorities.