Popular on RARE Portal

My communities
 View Only
Discussion Thread View

🔎 Dealing with the Diagnosis

  • 1.  🔎 Dealing with the Diagnosis

    Posted 11-30-2022 09:39
      |   view attached
    🔎 I just met Gary David and he shared with me this great article he had written. #NewlyDiagnosed #trisomy13

    He talks about diagnosis being a road map -- but not the map you might expect.
     Annemarie Jutel describes her own experience in Putting a Name to It: Diagnosis in Contemporary Society. "Receiving a diagnosis is like being handed a road map in the middle of a forest. It shows the way-but not necessarily the way out."
    "Sometimes there is no way out. Rather than showing you how to get back to where you came, the map simply shows where you now reside, what the neighborhood is like, who your new neighbors are going to be, and maybe how long you are going to live there. There is no way out."

    This struck me as a better way to say "don't google it".
    Our geneticist "warned, "I'm going to tell you what I think it is, and I'm going to tell you not to look it up online. You're going to do it anyway, so keep in mind that what you see online are the extreme cases." The geneticist was clearly familiar with the parental freak-out that ensues from even a casual WebMD or Google Image search."

    Read the article here.


    Daniel DeFabio

    Global Genes
    Director of community engagement