Study highlights social barriers EB patients face in school, at work
Flexible arrangements, support from patient organizations can make life better
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From early school through adult life, people with epidermolysis bullosa (EB) consistently face peer discrimination, institutional inflexibility, employment challenges, and administrative burdens, according to patient interviews.
Family support, understanding educators and colleagues, flexible work arrangements, and patient organizations emerged as the most meaningful facilitators of social participation in the life of a person with EB.
“Supporting patient organizations in their advocacy efforts may help reduce stigma, improve awareness, and ultimately enhance social participation of individuals with EB,” the scientists wrote.
The study, “Social participation of patients with epidermolysis bullosa: barriers and facilitators in education, employment, and economic life – a biographic interview study,” was published in the Orphanet Journal of Rare Diseases.
EB is a group of rare disorders characterized by extremely fragile, blister-prone skin that bruises easily with even minor physical contact. EB care mainly focuses on managing symptoms, preventing complications, careful wound care, and reducing physical stress on the skin.
Study aims to understand adults’ experiences
Protective measures, however, can limit physical activity and social participation, and excessive restrictions can affect a person’s well-being. Physical limitations, such as reduced mobility or impaired hand function, and visible skin lesions can further contribute to social isolation.
Most research on EB and social participation has focused on children, particularly their involvement in school. Adults’ experiences have received much less attention.
To address this gap, scientists in Germany conducted interviews with 12 adults with EB, ages 20-70, to assess three areas of social participation: education, work and employment, and economics. Of the EB types, five had dystrophic EB, five had junctional EB, and two had EB simplex.
The researchers found that collaboration among parents, teachers, and peers in early school education helped create inclusive environments. A stable school setting allowed supportive accommodations to remain in place over time, the study showed.
Yet every participant reported experiencing bullying, inappropriate comments, or social exclusion at least once, often triggered by visible differences or misconceptions about EB being contagious.
One participant described the effect: “They distanced themselves from me, keeping their distance in a way that I was sometimes completely alone at school.” Some peers also reacted negatively when students with EB received special allowances, such as more frequent absences.
In higher education and vocational training, participants often chose their fields based on feasibility rather than interest, favoring jobs with low physical demands or offering remote work.
“I chose a field where I knew I would have good chances of working completely remotely in the future because my physical condition wasn’t improving,” one noted.
Patients reported less stability in the later stages of education than in the early school years. Participants said they had to renegotiate accommodations repeatedly. And while peer bullying decreased as children matured, social and extracurricular opportunities became fewer.
“During my school years, I was very active,” one participant said. “But in university, things changed — there were just no opportunities that fit my condition.”
Severely affected participants frequently encountered discrimination when seeking vocational training placements. One respondent said, “I actually wanted to become a tax clerk, but because of my illness, no one wanted to take me.”
Employment services offered few options, and finding a job was often difficult for those with severe EB. Discrimination during hiring was common, with participants saying they were overlooked due to appearance or disability:
“As soon as they saw ‘physically disabled’, they thought, ‘We do not need that,” said one patient.
Workplace policies make a difference
Patients said that once they were employed, some colleagues underestimated their professional abilities. Yet others were supportive, helping participants feel valued without making disability a focus.
“My colleagues don’t see me as someone with a disability but as a normal employee,” one person said. “When I need help, they offer it without making me feel dependent.”
Proactive staff and policies that allowed medical leave semesters made a meaningful difference. “That extra time made it possible for me to complete my first state exam successfully,” one participant said.
Flexible hours, part-time arrangements, and remote work were also significant. One respondent described the relief of working from home: “I wear sweatpants and flip-flops — or sometimes no shoes at all, which really helps with my affected skin areas.”
In economic life, participants relied on reimbursements, social security, and health insurance, but administrative burdens made these systems more of a barrier than a facilitator. Repeatedly justifying their condition to access support caused many patients considerable stress.
“I kept thinking, ‘Why don’t they believe me?’ Now I have to write 30 letters, run to the doctor again, get another certificate,” said one. “It drains your energy.”
Out-of-pocket costs for medical supplies were also burdensome, leading some participants to limit wound care.
The primary facilitator helping lessen the burden of EB was support from patient organizations, which helped navigate bureaucratic processes. “The patient organization is really, really good,” said a participant. “If something needs to be handled, like paperwork, which there is a lot of. […] They take care of it.”
“This study has taken a first exploratory step by identifying environmental factors contributing to participation across education, work and employment, and economic life,” the scientists wrote. “Addressing the accessibility of social support systems and increasing public awareness of EB through education and advocacy efforts could enhance the participation and overall well-being of individuals living with EB.”
