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  • My Story
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    • My History with Diabetes
    • My History with Hearing Loss
    • My History with Vision Loss
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Living with Wolfram

  • About Depression

    Posted on 20 de May de 2017

    Psychiatric symptoms are very common in Wolfram syndrome patients. Researches on WS report that, many times, suicide attempts happen impulsively, in a moment of feeling extremely unhappiness. Changes in character, mood and variable in expression are also considered a consequence of WS gene. As a Wolfram patient, I have already…...

  • My History with Diabetes

    Posted on 29 de March de 2017

    There I was, a small 4-year-old child, lying in a hospital bed. Lost, afraid, anguished, and without understanding what was happening to me and around me, I just sought to look at my parents and seek reassurance. The days went by in the hospital, and I understood a little more…...

  • My History with Hearing Loss

    Posted on 29 de March de 2017

    What takes a 13-year-old to accept and believe that she has a hearing loss? At first I thought I had deficit of attention and that when someone talked to me and I did not understand, it was because I was distracted. Until these “distractions” became more frequent and caught my…...

  • My History with Vision Loss

    Posted on 29 de March de 2017

    I remember when the teacher put me in the back row of the classroom because of the seating chart which dictated where each student would sit in class. It was from then on that I began to notice my visual difficulty, since I could not see the board sitting at…...

  • Visit to St. Louis

    Posted on 29 de March de 2017

    Certainly, St. Louis has become an extremely important city in my life because it is where I met people who welcomed me with love and open arms. These people struggle fiercely every day for a cause that, unfortunately, affects me and people they love. Well, who am I talking about?…...

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LIVING WITH WOLFRAM

  • (Português do Brasil) Dia Mundial das Doenças Raras
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Who we are

This site is not just my voice; it is also the voice of a rare disease. We work each day, together with the help of doctors and researchers, to aware people and to get closer to the cure or to a new treatment for the manifestations associated with Wolfram Syndrome.

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