Most rare diseases have no cure, so living with a rare disease is an ongoing learning experience for patients and families. Here is a collection of stories and videos from people who have generously shared their experiences of living with a rare disease. Would you like to share you own experience? Contact us for more information
Search the below living with a rare disease stories that are listed A – Z according to disease name.
Cindy from the US tells us her story of living with Behçet's disease, a chronic condition resulting from disturbances in the body’s immune system. Connect with others living with Behçet's disease in the...
My name is Daniela Chiriac. I am 34 years old, and a member of a family of three, including my mother and my elder sister. All of us are suffering from progressive muscular dystrophy. I was diagnosed with Facioscapulohumeral muscular dystrophy in 2010, after a bad episode at work.
Familial cold autoinflammatory syndrome type 2 (FCAS2) is a rare inflammatory disease characterised by recurrent episodes of rash, joint and muscle pain, fever and chills, swelling of the extremities and conjunctivitis, all as a result of exposure to cold. This...
Luigi Ferraro, was the happiest man in the world: his wife Daniela was about to give birth to their second child. Then, without warning, their whole world fell apart. Only five hours after Daniela gave birth, she started having headaches and went into a coma.
Ritje’s husband JiePie passed away from the rare disease multiple system atrophy (MSA) in 2009. Here she tells their story. It took six years to get a correct diagnosis. Six years to be heard, to find a...
It was Alberto Vargas' birthday when he got conclusive news that his youngest daughter, Valeria, had Niemann-Pick disease. Middle daughter Fernanda had already died of the incurable degenerative disorder.
My first daughter Marilena (from Maria Eleni) was born prematurely (32 weeks of pregnancy) due to oligohydramnios, a few weeks before the Olympic Games were held in Athens in 2004. She had very bad respiratory issues to begin with. She was diagnosed with Okamoto syndrome when she was 2 years old.
ver historia personal en: www.cerasale.com.ar [dado de baja por la Cancillería Argentina por temas políticos, propio de la censura que rige en nuestro medio]//
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