Living with ocular prosthesis, but without velvet gloves: Retinoblastoma

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.

Page created: 16/10/2012
Page last updated: 16/10/2012
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases