Rare diseases: "Recognition of a disability is still complicated in Europe."

euronews (in English)

Diagnosis and treatment of rare illnesses can often be complicated due to the condition's very nature. Caroline suffers from a rare genetic disease called Stargardt Syndrome. Smart Health spoke to her about what it's like to live with a rare disease.

Transcript

00:00 It's still complicated in Europe, and the recognition of the disability is even more complicated.

00:09 My name is Caroline Sableroll. I have Stargardt's disease, which was declared at the age of 6.

00:22 The first few years were really complicated, as all the doctors were looking for all the possibilities

00:31 to find a solution to the visual problem.

00:37 Then, thanks to research, the discovery of the KMUT gene, we were able to name my pathology.

00:50 Of course, we are confronted with many difficulties in everyday life,

00:56 but this difficulty allows us to gain great strength.

01:02 This strength is really overwhelming, and we must always fight to do what we want,

01:14 to be free with this disability, and to realize ourselves in our professional,

01:20 personal and family life.

01:23 So, ultimately, it's a great opportunity.

01:26 [MUSIC]

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