11094435908632364994308624

  Rare Revolution Magazine
  • Home
  • Rare Revolutionaries
    • Our Charity Partners
    • Revolutionaries Community
    • Join the Rare Revolution - Charities sign-up
    • Our Corporate Friends
  • Blog
  • Back Issues
  • #RareYouthProject
    • RYP Blog
  • The People of RARE
    • CEO Series
    • PEO Series
  • APP & Downloads
  • Media

RARE INSIGHTS

For the undiagnosed child

26/1/2017

0 Comments

 
Through the work of our charity and through this magazine we are very blessed that our lives entwine with that of many families. Sometime its fleeting support, sometimes is long and lasting relationships.
 
But my frustration never gets less when I hear of the excruciating battles some families face in the quest for a diagnosis.
 
What we must remember, and what the clinical, patient facing world especially must remember is that undiagnosed is just that. A point in time when the answers are unknown and even the right questions aren’t yet being asked. Please do not let this window of time, be when families fall through the net and into despair.
 
To hear today that a child feels that he isn’t believed is a wake-up call to all!
 
It is not the job of a child to portray him or herself in a manner as to convince others on the `realness` of their rare condition, or feel the burden when they fail to see tests yield results.
 
For the sake of every child in this undiagnosed limbo we must make sure that it is remembered, that just because it doesn’t `fit` doesn’t mean it doesn’t exist, it just means the grown-ups need to work harder to ask the right questions, run the right tests and find the right science to get the right answers.

0 Comments

Your comment will be posted after it is approved.


Leave a Reply.

    Author

    Rare Revolution Editor

    Archives

    February 2021
    January 2021
    December 2020
    November 2020
    October 2020
    September 2020
    August 2020
    July 2020
    June 2020
    May 2020
    April 2020
    March 2020
    January 2020
    December 2019
    November 2019
    October 2019
    September 2019
    August 2019
    July 2019
    June 2019
    May 2019
    April 2019
    March 2019
    February 2019
    January 2019
    December 2018
    November 2018
    October 2018
    September 2018
    August 2018
    June 2018
    May 2018
    April 2018
    February 2018
    January 2018
    November 2017
    October 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    October 2016
    September 2016
    July 2016

    Categories

    All

Rare Revolution is published by NRG Collective, a not-for-profit media company specialising in rare disease content
Contact Us
Editor:  
   editor@rarerevolutionmagazine.com
​Advertising: rstewart@rarerevolutionmagazine.com

  • Home
  • Rare Revolutionaries
    • Our Charity Partners
    • Revolutionaries Community
    • Join the Rare Revolution - Charities sign-up
    • Our Corporate Friends
  • Blog
  • Back Issues
  • #RareYouthProject
    • RYP Blog
  • The People of RARE
    • CEO Series
    • PEO Series
  • APP & Downloads
  • Media