Epidermolysis bullosa

The main social implications of EB are related to relate to unmet needs that significantly affect the quality of life for those affected. Some of the most common social challenges include:  

• Decreased autonomy to do the daily basic activities in the affected people.
• Accessing Disability Benefits in Spain: To qualify for disability benefits, individuals must first apply for a disability certificate. A medical team assesses the percentage of disability and level of dependence, which determines eligibility for social benefits. This bureaucratic process can be complex, and obtaining an appropriate disability percentage or dependency level that reflects actual needs is not always straightforward. The lack of awareness surrounding EB, particularly among those responsible for evaluations, limits access to economic benefits and services that could enhance the quality of life for affected children and their families. Having a comprehensive report from an expert multidisciplinary team at a specialized reference centre can support the assessment process. 

Specific Needs for EB Patients: Many particular requirements must be addressed with specific benefits, including home modifications, heating or air conditioning, special footwear and clothing, replacement bandages, self-propelled wheelchairs, rehabilitation splints, and assistance for daily activities.  

Impact of Disability Recognition: The ease of accessing or coping with the costs of these benefits often hinges on the recognition of disability and/or dependency. It is crucial that these technical aids are adapted or included in the prosthetics catalogues to reflect the realities faced by individuals with EB. Additionally, it is important to understand how to access these prosthetic aids according to the regulations of each Autonomous Community. 

• Challenges for Caregivers: Primary caregivers often struggle to achieve a work-life balance due to a lack of professional support. Many parents find themselves taking on roles beyond those of caregivers, increasing mutual dependency and limiting their social and professional opportunities. There are state-level resources available, such as the benefit for minors affected by cancer or other severe diseases (CUME). EB has been included in this program, which provides financial support to one parent or legal guardian when both are employed, allowing them to reduce their work hours by at least 50% to care for their child. This benefit must be renewed every two months through a primary care physician.
• Economic Impact on Families: The costs of treatment and care can be a source of frustration and uncertainty for many families. It is essential for a knowledgeable professional team to assess these needs and provide detailed reports that help highlight the challenges faced by these families, thereby informing public policy. Specific resources not covered by Social Security that can financially impact families include rehabilitation, dental care, transportation outside their home community, podiatric care, early intervention, home adaptations, and specialized transport. To alleviate the financial burden from treatment and skincare products, various regulations across autonomous communities aim to provide these items at no cost or at reduced rates for products not covered by the National Health System.
• Challenges in School and Work Integration: Throughout various phases of education, ignorance within the educational community can lead to discrimination against individuals with EB. This stems not only from a lack of information about the disease but also from insufficient personal and material resources, such as access to educational support professionals or appropriate classroom ratios. Families and faculty must be vigilant to detect potential bullying or isolation in the classroom. Upon reaching adulthood, individuals may face barriers in the job market due to prejudices regarding appearance and work performance, limited accessibility for individuals with functional diversity (such as inflexible schedules, inadequate workspaces, or tools), and constraints on educational opportunities.