“Cold antibody autoimmune hemolytic anemia (CAD) is an ultra-rare and consequently very poorly understood disease. The fact of rarity also means that there is no appropriate diagnosis and consequently patients must go through a diagnostic process that goes from the moment of the appearance of the first symptoms to an actual diagnosis which can take even years with a situation of uncertainty, of understanding, frustration, sometimes even anger.” She said it Annalisa Scopinaropresident of Uniamo Italian Federation of Rare Diseases on the occasion of the presentation of the diary “A life without winter” with stories of patients and caregivers born from an initiative by Sanofi in collaboration with FB&Associati, and with the contribution of Cittadinanzattiva and Uniamo Italian Federation of Rare Diseases.
The diary “is a sort of handbook – underlines Scopinaro – a book available to clinicians who want to delve deeper into the pathology but also to other patients who can find a similarity in the stories they read and therefore have the desire to join in a community because it would also be very important that these people could find a community of reference for all new diagnoses”. Really, “I hope that this diary, dedicated to an unknown pathology, can be a source of information for specialists, of raising awareness for everyone and of stimulus for the institutions to seek, even for these people, the best paths to make their lives less difficult” he concludes.
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