Alport syndrome is a serious heritable condition which causes hearing loss, kidney problems, and eye abnormalities. Hearing loss usually starts to develop in childhood in affected patients and can have a profound effect on speech and language development.

Hearing loss in Alport syndrome

Hearing loss caused by Alport syndrome is never present at birth. Parents and teachers are usually the first to notice that the child is having trouble hearing conversations or lessons in class. Hearing loss gradually gets worse and most patients become deaf by their 40s or 50s.

Most patients with Alport syndrome are able to compensate for their hearing loss with hearing aids, but it is recommended that they also learn sign language.

Hearing loss often correlates with the progression of kidney disease. Therefore, it is important for Alport syndrome patients to have their hearing checked frequently.

What is speech and language therapy?

Speech and language therapy provides treatment, support, and care for children and adults who have difficulties with communication.

Speech and language therapists work with patients to help them meet their communication needs in everyday life. In the case of children, therapists can recommend strategies for teachers and parents to help the patient outside of therapy appointments.

Speech and language therapy in Alport syndrome

Alport syndrome patients may begin losing their hearing before their language skills have fully developed. Language and speech therapists can work with the child to develop language skills, making it easier for them to speak clearly and understand speech.

A case study in twins diagnosed with Alport syndrome was published in the Journal of Otology. The children were monitored for seven years, starting at age 15. One boy had developed hearing loss after language development, and the other had significant hearing loss prior to language development. The boy who had developed hearing loss prior to language development had significantly lower language comprehension at the beginning of the study. The boys’ hearing was assessed yearly, and they worked with a speech therapist about twice per week. Both boys showed improvement in speech and language skills over the course of the study. The authors emphasized the importance of communication among all members of a patient’s treatment team so that all the patient’s needs can be met.

While hearing loss and problems with language are not life-threatening, both can affect the patient’s quality of life.

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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.