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Living with ocular prosthesis, but without velvet gloves: Retinoblastoma

October 2012

RetinoblastomaRetinoblastoma. Only one word. One word that few people know or have ever heard. Yet it causes apprehension. Sounds ominous. And people who learn about it for the first time in their lives from a doctor will probably never forget that moment. The parents of the today 5 years old Julia Fischer in Rhineland, Germany, felt the same. Retinoblastoma is a cancer. It is a malignant tumour in the retina. As the retinoblastoma may only grow in immature retinal cells, the tumour only occurs in children up to the age of five. This is the description you would find in medical literature. Julia – she was born with this form of rare cancer.

Her story is the latest addition to EURORDIS’ Living with a Rare Disease series. Most rare diseases have no cure, so the art of living with them is an ongoing learning experience for patients and families. EURORDIS has been collecting stories from rare disease patients and their families since 2005.  These living testimonies are a way of breaking from isolation – a way of connecting people with others dealing with the disease and facing similar situations.

Read Julia’s story together with more than 50 other stories of hope, sorrow, achievement and the ordinary life of extraordinary people.