Let's talk KSS

Kearns–Sayre syndrome, or KSS, is a rare type of mitochondrial disease, mito for short. It usually starts before the age of 20. KSS often affects the muscles around the eyes. It can also affect the back of the eye, which may change night vision or side vision. Some people may also have heart symptoms.

In this episode, we talk through what KSS can look like day to day, and how it can overlap with chronic progressive external ophthalmoplegia, or CPEO. We explain why diagnosis can involve looking at your symptoms over time and doing more than one type of test, including genetic testing. We also discuss the kinds of health checks that may be part of care, like eye, heart, hearing, and hormone checks.

The information in this episode is based on Mito Foundation resources, including the KSS information page. For support, call the Mito Foundation Helpline on 1300 977 180 or visit mito.org.au. To stay connected, subscribe and follow MitoCast wherever you found this episode.