Libby Clegg health: Paralympian opens up about her rare condition – what is it?

Libby Clegg is a double Paralympic champion sprinter who won silver at the 2008 Summer Paralympics and gold in Rio at the 2016 Paralympic Games, where she broke the world record for her sprinting performance.

The Paralympian’s next challenge will be on ITV’s Dancing on Ice 2020, which starts in January.

The fact that Libby lives with the degenerative eye condition makes her extensive list of achievements and goals all the more impressive.


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Libby lives with Stargardt disease, a a rare inherited condition affecting one in 8,000 to 10,000 people in the UK, according to the NHS.

In Stargardt’s the light-sensitive layer of cells in the macular region of the eye degenerate.

The macular is the area at the back of the eye which is responsible for the fine detailed vision necessary for activities such as watching TV and reading, explains the NHS.

Whilst people with Stargardt’s do not lose their peripheral (side) vision, many people will reach the point of severe vision loss.

Ahead of her glowing victory in Rio, where she went on to win gold in women’s 100m race, she described her symptoms to the Mail Online.

She described her vision as “like looking at a pixelated computer screen or a scrunched-up firework – lots of bright colours squashed into my central vision. But I have some peripheral sight – barely any – and with what little sight I do have I was able to use to follow the lines on the track”.

For the event, however, Libby could not even utilise on her peripheral vision. Libby had to compete in the event wearing a blind fold because of the category she will be competing in.

She expressed her apprehension at the time: “Leaving the starting blocks wearing a blindfold was scary. There’s no point half doing anything so I put full force into it.”

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Libby added: “But you get the feeling that you’re falling forward into nothing, and you have no concept of where the ground is. It made me feel sick at first.”

According to the NHS, the main symptoms Stargardt disease are:

  • A loss of detailed vision and colour perception
  • Wavy vision
  • Blind spots
  • Blurriness
  • Difficulty adapting to low light levels

Can it be treated?

UV-blocking sunglasses can offer some protection for remaining vision. At the moment, however, Stargardt’s is untreatable, says the NHS.

A number of novel interventions are currently under investigation, including stem cell therapies, which hold some promise, reports the health site.


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“Stem cells are a special type of cell which, when put under the right conditions, can develop into many other types of cell including those found in the macular,” explained the health body.

It is hoped that new cells derived from stem cells can be grown in a laboratory to be transplanted into the eye to replace areas of dead or non-functioning cells, says the medical site.

Stem cells can be sourced from a number of places including blood, bone marrow, umbilical cord and fertilised egg cells.

“More research will need to be undertaken in the future to determine to what extent stem cell therapy might help improve vision for people with Stargardt’s,” added the NHS.

In a recent interview with the The Telegraph, the Paralympian explained that, due to her condition being recessive, her seven-month-old sin Edward will not inherit the condition.

However, there is a 50/50 possibility her son will inherit his father’s rare condition.

Libby’s fiance Dan Powell lives with cone-rod dystrophy, an umbrella term for a group of inherited eye disorders.

Libby is not concerned, however, which reflects her lifelong optimism and accomplishments: “I think because we’re both very independent blind people we’re not worried about it. We’re both successful in what we do.”

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