There are 100 people in the CHARGE Syndrome map

CHARGE Syndrome advice

Which advice would you give to someone who has just been diagnosed wit...

2 answers
CHARGE Syndrome jobs

Can people with CHARGE Syndrome work? What kind of work can they perfo...

2 answers
Prevalence of CHARGE Syndrome

What is the prevalence of CHARGE Syndrome?

1 answer
Couple and CHARGE Syndrome

Is it easy to find a partner and/or maintain relationship when you hav...

1 answer

Stories of CHARGE Syndrome

CHARGE Syndrome stories
My Sweet Layla Rose, who was born full term, was born with preexisting conditions that were not detected during my pregnancy. At the time of birth, Layla experienced heart failure due to left to right shunting in the setting of a CAVC (complete atrio...
CHARGE Syndrome stories
My son Joshua was born April 28, 2009. He has 8 heart defects, 2 strokes, a clinical CHARGE diagnosis (he doesn't have the coloboma), epilepsy, central apnea, hypopnea, Stage 3 kidney reflux, deaf, malformations in his ears preventing him to use CIs,...
CHARGE Syndrome stories
My son was born in 1998. He has CHARGE - diagnosed within 24 hours and a whole list of additional issues they initially thought was Chromozone 6 Ring Syndrome.. After almost 100 surgical interventions - including 2 HEART, 2 eye, etc.. He is living in...
CHARGE Syndrome stories
My son, Henry was born 1/31/2013. he has CHARGE Syndrome with Colombola, no cochlea, a little heart defekt, delay in his development, kidney problems (only 1 left), doesn't communicate BUT is the most happy little Henry. We call him Sir because he is...

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CHARGE Syndrome forum


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Statistics of CHARGE Syndrome

4 people with CHARGE Syndrome have taken the SF36 survey. Mean of CHARGE Syndrome is 2091 points (58 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey

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CHARGE Syndrome