Photographer Sheds Light on Rare Diseases in Remarkable Project

Ceridwen Hughes is known for capturing visceral moments of reality in striking photography series. This time, she has navigated into the devastating world of rare disease and she’s using her camera to shed light on harsh realities.
She’s gained buzz over the past two years for her series “The Rare Project,” portraits of Welsh and English children suffering from the rarest of diseases.

Ceridwen dressed patients and their medical staff in regular clothing and put them in their regular procedures like surgery, medical consultations or other treatments. Her personal name for the project is “Rare Beauty.”

The idea was to inject a sense of photographic beauty into an environment that was otherwise sterile and bleak.

This series was inspired by her 10-year-old son Isaac who suffers from a rare disease himself called Moebius syndrome. This rare neurological disorder is characterized by weakness or paralysis of multiple cranial nerves, typically facial nerves. To learn more about Isaac’s disease, click here.

His mother remembers the days when he was younger and unable to walk, talk and hesitant to eat. Today, she is so proud of the progress he has made. During a drive to school, when Isaac was chatting away, he said words she thought she’d never hear him say: “I am a chatterbox aren’t I mummy?

While dealing with Isaac’s disease, she has met a lot of people that have added further inspiration for the Rare Project.

Meshed with the photos are supplemental interviews and anecdotes from the subjects, along with the medical staff and families. Her hope is that these photos will inspire people to support those with rare diseases in their own communities.

To check out “Rare Beauty” for yourself, click here.


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