Finding out about Fuchs' Dystrophy

FuchsFriends UK are an excellent patient support group

Fuchs' dystrophy is a very common inherited abnormality of the clear part of the front of the eye – the cornea. It affects the back layer called the endothelium, a layer of pump cells that stops the cornea getting waterlogged and cloudy. In people with Fuchs’ dystrophy, this layer may not be as clear as normal and may cause light scatter. Pump function can also fail. The endothelial cells already pump more slowly when the eyes are closed at nights, and endothelial failure in Fuchs’ dystrophy typically causes the vision to become misty in the mornings.

Fuchs dystrophy is often so mild that vision is never affected. Not everyone needs treatment, and the main message for anyone worried about a new diagnosis of Fuchs’ dystrophy is don’t worry too much. When vision is affected, there are plenty of good treatment options.

If you have been diagnosed with Fuchs’ dystrophy and would like to talk to other people who have the same problem, I would strongly recommend joining FuchsFriends UK. I first met FuchsFriends over 10 years ago, when they kindly invited me down to Bristol to talk about what was then a new treatment called endothelial keratoplasty or ‘EK’. This is a keyhole form of corneal transplantation that has evolved into DMEK – the standard treatment for poor vision in Fuchs’ dystrophy.

FuchsFriends have a lively on-line forum, and organize excellent meetings at which you have an opportunity to put your questions directly to surgeons and researchers. I was lucky enough to be invited again in London in April 2018. As well as providing mutual support and advice on what you can expect from people who have already had the treatments you may be offered, feedback at FuchsFriends’ meetings gives surgeons and researchers a very valuable insight into what areas we still need to work on and where we need to work harder to get the right messages across.

You can link to the FuchsFriends UK website here.