debra Providing School Resources to Help EB Students in Class

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by Marta Figueiredo PhD |

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With the new school year launching, the Dystrophic Epidermolysis Bullosa Research Association of America — better known as debra of America — is aiming to facilitate conversation and collaboration between families of children with epidermolysis bullosa (EB) and their teachers and classmates.

To that end, debra is providing a comprehensive set of resources designed to help improve the lives of children with EB at school. The resources range from educational videos to informational cards and sheets, to sample letters that parents of new kindergarten or first-grade students can send to their children’s classmates.

“Integrating a student with EB into a public school classroom setting can become a natural part of the school experience for all involved,” the nonprofit organization states on the “School Resources” section of its website.

Of note, the website includes another resource section designed to aid college students in “balancing care, a social life, and higher education.”

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Estimated to affect 1 in every 20,000 births in the U.S., EB is a group of rare skin diseases marked by extremely fragile skin that can easily break and blister, even with gentle rubbing or accidental pressure.

As such, it is important to educate the school community on the disease, and on the “do’s and don’ts” of working beside a child with EB, debra said. The goal is to create a safe environment that understands and meets the unique needs of EB students while making them part of the class.

debra’s school resources include two videos developed by the multidisciplinary Epidermolysis Bullosa Team at the Children’s Hospital of Colorado.

Titled “What is ED?” the first is an educational video for the classroom that explains the disease to children by comparing the skin to grass growing in the students’ backyards. A “Mythbusters” section shows that students with EB are similar to their classmates, just a bit more fragile. The second, longer video, “Your Welcoming Classroom,” is designed to assist teachers, school nurses, and caregivers in helping students with EB feel more accepted and less isolated in the classroom.

Several relevant topics are discussed in the second video, such as patients’ swallowing difficulties, the importance of bandages and dressings, characteristic versus infection-suggestive odors, depression, and the use of pain medication.

Bathroom time, parent-teacher communications, good days and bad days, and the importance of patients’ control over their lives also are discussed in the “Welcoming” video.

To teach the school community about the rare disease, debra also created business-sized EB Cards and informational sheets that quickly explain what EB is and how it affects patients. One key fact it shares is that the disease is not contagious.

The cards can be passed out in patients’ schools, and given to students, teachers, and administrators. Parents can print them and the other informational resources at home and/or order a free set of 30 EB Cards.

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The association also provides guidelines and sample letters that can be given to teachers or school administrators, school nurses, and parents of other students. The letters were developed for younger children, specifically for when the affected child is beginning kindergarten or first grade, or is new to the school system.

Instead of focusing on the disease, debra recommends that parents use such letters “to explain your child’s abilities and times they need assistance.” Note that most letters will need prior approval from the principal or other administrators to be distributed among the entire class.

Information on the educational rights of children with EB also is accessible, as well as assistance to navigate educational and other issues through debra’s Legal Aid Program.

Parents and school nurses are encouraged to speak with the association’s EB Nurse Educator, a registered nurse experienced in EB care, by phone or email. Common topics include treatment options, wound care, and physician referrals.

Students seeking higher education are encouraged to visit their prospective college’s Office of Students with Disabilities to learn more about how the school can help. Examples of how colleges can help accommodate students with EB include allowing extended test time, having a note taker, and permitting more time for assignments.

In addition, through its Wound Care Distribution Program Debra offers wound care supplies — including specialized bandages, gauze rolls, retention net dressings, and ointments — to EB patients living in the U.S. who are temporarily unable to get them. Importantly, the association notes in the program’s webpage that some shipping delays may currently occur due to the COVID-19 pandemic.

Since 1980, debra of America has funded research on the diagnosis, treatment, and cure of EB. It also offers free programs and services that provide information and support to people living with the disease, as well as their families.