by: Dr Gina Sampson
Finding out that you have Retinitus pigmentosa (RP) is always a shock, we rely on our eyes without question.
My glorious future lay spread before me, drivers licence in my hand, a rich medical career, travel, the Arts, marry a Professor, beautiful babies . . . you know what girls are like!
And then, in five stunned minutes, it was gone; I went into shock in Adderley Street and found myself in Stuttafords with a stranger, a God-given lady and cups of tea asking me what had happened. Never forget the people who appear unexpectedly in your life and make things better. I am so grateful, and I wish I could extend my work of support at hospital eye outpatients to ease those terrible moments.
So I drove home, angry by this time. Opthalmologists examined my eldest sister and my youngest sister were both easily diagnosed with RP. Sister number 3 was fine.
One day quite soon, the full Genome Study will reveal all.
Pay attention dear reader, our family history of RP is still a mystery. My Great grandparents on both sides , NO RP reported. My grandparents on both sides, NO RP, BUT my eldest aunt had one of those” RP moments” , aged nine and was diagnosed . Her 2 sisters had NO RP symptoms (night-blindness) no RP signs in the retina. The baby sister was my beautiful mother.
So what did I do ? I worked at the National Pathology Laboratories in Cape Town, saved my pennies and boarded an ocean liner for England —and I didn’t tell anyone about RP