Alport Syndrome and Schooling

Alport syndrome is a genetic disorder that can lead to chronic kidney disease, progressive hearing loss, and eye abnormalities. Depending on the age when symptoms appear, they can influence the education of a child.

Hearing loss and schooling

Hearing loss is a common symptom of Alport syndrome and often occurs before any kidney damage is evident. This is more frequent in male patients with the X-linked form of Alport disease.

Around 50 percent of male patients with X-linked Alport syndrome will have hearing loss by age 15. This percentage increases to 75 percent by age 20. While hearing loss is less common in female patients, it can still happen and should be monitored.

Hearing loss can make it more difficult for children to engage in school lessons, leading them to become disruptive. It can also contribute to feelings of isolation from their peers. Hearing aids, as well as speech and language therapy,  can help them follow and participate better in class.

A case study, published in the Journal of Otology in 2017, followed the progress of twins with Alport syndrome from age 15 over a seven-year period. The study suggested that progressive hearing loss can cause speech and language skills to deteriorate.

However, with speech and language therapy tailored to the twins, it was possible to improve these abilities. The case study noted that a collaboration with speech-language pathologists and audiologists along with their regular healthcare team can help give children the best chance to succeed in school and beyond.

Sight problems and schooling

Eye abnormalities in Alport syndrome can be common. These do not always cause problems with vision but when they do, they can make it difficult for children to see teaching aids, such as whiteboards, and this can disrupt learning.

Allowing the student to sit at the front of the classroom may help, but ideally, vision problems should be addressed quickly. This could involve corrective or protective lenses or surgery.

Children with Alport syndrome should have frequent eye checks to follow any deterioration in vision so that it can be caught before it affects schooling.

Individualized education plans

Alport syndrome kids may benefit from an individualized learning plan. This will set out the student’s current performance and what they should achieve in the coming year. It also should describe what additional help the student might need.

A tailored education plan can help make teachers aware of any issues the student has so they can plan accordingly to accommodate this in the child’s lessons.

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Alport Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.