A West Clare woman living with a rare disease says although you get used to it, it never gets easier.
Today is Rare Diseases Day, which is held each at the end of February to raise awareness for rare diseases, generate change and imrpvoe access to treatment and medicial representation for those affected.
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Cindy O’Brien from Kilrush has Parry Romberg Syndrome which has an incidence of one in 250,000 to 750,000 people and is characterised by progressive shrinkage and degeneration of the tissues beneath the skin.
The condition is more common in women and typically first appears between the ages of five and 15 but Cindy says the challenges it poses don’t go away as you get older.
You can listen to the full interview here:
