Alport Syndrome

Alport Syndrome and eyes

Although not all people with Alport Syndrome will experience eye abnormalities, some may develop eye problems or changes. For many people with Alport Syndrome, ‘flecks’ may be seen on their retina (‘dot-and-fleck retinopathy’) but ‘flecks’ don’t usually cause sight problems. Alport Syndrome is linked with certain lens abnormalities (also known as ‘anterior lenticonus’) which can lead to worsening eyesight and possibly cataracts (that may need removing). Some people may experience ‘corneal erosion’ which could give symptoms of dryness and itchiness. Here Dr Omar Mahroo, an eye doctor explains the problems people can experience with their eyes if they have Alport Syndrome:
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Some people we interviewed were aware that eyesight problems can be part of having Alport Syndrome. Often people talked about hearing loss and eyesight issues together and whether they had experienced any problems with either. 

Those with children with Alport Syndrome said it was important to have regular eye tests in case there were problems in the future. People spoke about other family members having problems with their eyesight. Debra said that she remembers her dad’s eyesight being really bad.
Some people who experienced eyesight problems were unsure about whether or how these were related to having Alport Syndrome, but some were sure it was due to Alports Syndrome. Some people couldn’t remember the name of their eye condition and wondered if their eye problems were caused by medication or kidney problems. People described having eye problems like an astigmatism or different shaped eyes that were “rugby-ball shaped” or “cone-like”. Others mentioned having flecks in their eyes.
A few people said they had cataracts removed from their eyes. Some were unsure if the cataracts were due to Alport Syndrome or whether it was a side effect from medication (like steroids). Some people thought that cataracts had developed after their kidney transplant. People had different experiences of having their cataracts removed.
Many of the people we talked to had not experienced any eyesight issues at all. Karen and Michael X said their families had experienced deafness and kidney problems, but no eyesight issues. People spoke about wearing glasses and having eye issues that they thought were not related to their Alport Syndrome. Angela said she had developed a squint in her eye but said she didn’t think it was caused by Alport Syndrome but was just “bad luck”. Several people said they had short-sightedness. Michelle said her son wore glasses and had short sightedness. Alan said he needed glasses but that his eyes “up to now are okay”. Diane said that she had very thorough checks on her eyes for problems with Alport Syndrome and although she says she has bad eyesight, the doctors had “never been able to find anything”.


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