HELLO.

I AM NOW 25 AND WAS DIAGNOSED WITH NF AS A SMALL CHILD. WAS REALLY QUITE ILL AND WAS HOSPITALISED SEVERAL TIMES DURING THE WORST OF IT, TAKING VERY LARGE DOSES OF STEROIDS. CAN'T REMEMBER EXACTLY WHAT DOSE (I'D HAVE TO CONSULT MY MOTHER), BUT I WAS TAKING LOTS OF TABLETS EVERY DAY, GOT VERY BIG AND FELT VERY ILL.

I REALLY SYMPATHISE WITH CHILDREN WITH THIS PROBLEM AND REMEMBER THE ANGUISH I WENT THROUGH WITH THE SIDE EFFECTS OF THE DRUGS. I WOULD CERTAINLY URGE ANY PARENTS TO BE AS SUPPORTIVE AS POSSIBLE AS THE PHYSICAL CHANGES RESULTING FROM THE STEROIDS ARE VERY DIFFICULT TO LIVE WITH AND NOT SO EASY FOR OTHER CHILDREN, OR SOME ADULTS TO UNDERSTAND.

MY PARENTS WERE GREAT WITH ME AND IT REALLY HELPED ME THROUGH SOME TOUGH TIMES, ESPECIALLY AT SCHOOL.

ON A BRIGHTER NOTE, I HAVE NOT HAD ANY PROBLEMS WITH THE NF SINCE MY MID TEENS DESPITE BEING SO ILL AS A CHILD. I WOULD URGE PEOPLE TO TRY TO STAY POSATIVE THROUGH THE HARD TIMES.

I KNOW THIS CONDITION COULD RETURN BUT REFUSE TO LET IT HANG OVER ME OR EFFECT MY LIFE AND I HOPE OTHERS CAN DO THE SAME.

IT IS A HORRIBLE CONDITION AND THE TREATMENT IS AWFUL BUT STAY POSATIVE AS I HEAR THAT NORMALITY RETURNS FOR THE VAST MAJORITY OF PEOPLE AS IT HAS FOR ME.

GOOD LUCK!

:cheers:

[i:321aa9b492]This message was automatically imported from the original Patient Experience[/i:321aa9b492]