On Monday’s Morning Focus Pat Flynn was joined by Anne Micks who is part of a new national campaign ‘Get Rare Aware’ which has been launched by Rare Diseases Ireland.
The campaign will see RDI hosting information events in each of the country’s new Regional Health Areas (RHAs) over the next two months to highlight the challenges people are encountering when seeking a diagnosis for a rare disease.
Anne’s daughter Ciara, aged 21, was diagnosed with Ehlers Danlos syndrome (EDS) in 2015. EDS is a little-known, debilitating genetic connective tissue disorder which affects the collagen. Collagen is in every part of the body from skin, blood vessels to organs.
Anne spoke about the challenges faced by her daughter has she navigates EDS in her daily life.
Speaking about why she is involved in the RDI Get Rare Aware campaign, Anne said: “As a parent and advocate for other individuals with EDS, I see regularly the challenges they face, not only with their condition but also their engagement with the medical profession in our country. Unfortunately, there is a significant lack of knowledge and understanding surrounding EDS and its comorbid conditions, which often results in those that are able travelling abroad for diagnosis/genetics and treatment plans.”
You can listen to the full interview below
