Alport Syndrome

Alport Syndrome -dealing with hearing loss

People with Alport Syndrome can develop hearing loss, at different points in their lives, caused by abnormalities in the inner ear. Some first realised they had problems with hearing at school and others had no difficulties until their 20s or 30s. Hearing loss may be one of the first signs or symptoms before a diagnosis of Alport Syndrome. People diagnosed with Alport Syndrome now have their hearing checked routinely, but in the past this was not always the case. Not everyone with Alport Syndrome has hearing problems. Alison had a kidney transplant but didn’t have hearing loss or eyesight problems. Steve and Richard Y both have experienced kidney failure and transplants, but neither have any hearing loss. Both felt they were unusual particularly as they have X-linked Alport Syndrome. 

Some people talked about developing hearing loss when they were children or teenagers. Mariam got hearing loss when she was 8 years old, as did Anthony and Patrick. Diane was in her late teens when her dad noticed her hearing had declined and told her to get a hearing test. People described their fears and worries about hearing loss. Sometimes people spoke about finding the hearing loss more debilitating or “more of an impediment” than kidney problems.
People talked specifically about how their hearing affected school or work. Diane said she didn’t finish college and gave up because of not hearing the tutor. Richard X said his hearing problems were picked up at school when the teacher noticed he wasn’t paying attention and was naturally lip reading. Robin said he felt his education was affected but later on his deafness didn’t affect him at work. Kevin said he didn’t feel it was a big deal having a hearing aid at school and said if he got teased, he “wouldn’t take it lightly” and said he had a few physical fights at school.
People spoke about their hearing and how it affected them socially. Mariam said that the kids at school were generally “really nice” about her hearing problems although a few of her friends get a bit fed up of repeating themselves. Jayne said she worried about her son getting bullied at school. People often spoke about lip reading naturally from a young age. Cynthia called it “face reading” but found it difficult to lip read if someone had dark glasses or a moustache.
People described their feelings about getting hearing aids in different ways. Paul felt that getting hearing aids made a world of difference. Patrick said that his friends were really interested in his new gadget and he felt a novelty. People spoke about the improvements in hearing aids over time saying that today’s hearing aids were much better. Older hearing aids were described as “bulky” and “large”. Cynthia said that her small digital hearing aids were better than the first hearing aids she got which were a “box-like affair” with an “ugly cord” that she put in a drawer. People spoke about a variety of “gadgets” they used to help with their hearing. People spoke about having a “loop system” to listen to one person speaking (i.e. a teacher) or watching the TV and a “T-switch” or “telecoil” in their hearing aid to connect to a hearing aid loop. People also spoke about different settings on their hearing aids depending on the environment.
People spoke about different types of hearing aids, especially the smallest in-the-ear digital type, and the differences between getting treatment privately or through the NHS. They also talked about getting a better service and after care when going privately although this was costly both for the appointment and the hearing aids. Richard X wore a mix of NHS and private hearing aids and said he preferred his NHS hearing aids because of their loudness which suited his moderate hearing loss at most frequencies. 

One person said that both NHS and private audiology shops are often geared towards an older generation, and appointments were often not given urgently or quickly – which they found frustrating because they needed hearing problems to be sorted quickly. Some said that batteries, tubing and repairs were provided free of charge on the NHS, but that care could be variable. Paul felt that hearing was not always included as part of a “care plan”. Some people said that they didn’t like the colour of NHS hearing aids. One person described them as a “disgusting beige colour” and that they wished there was more choice with colours and designs. At the same time some said that the digital hearing aids were more prone to going wrong with ear infections (as the digital components are all in the ear).

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