So what exactly is wrong with her?

joyfulpromise


I’ve talked a lot about this project and what I’m trying to achieve but have never explained in any detail about the eye condition that’s affecting my sister, so here we go…

Retinitis pigmentosa (RP) is an inherited eye disease in which the light sensitive retina progressively degenerates, leading to blindness.  In the early stages it’s very difficult to predict the speed of progression of the disease or the extent of vision loss for an individual, but regular checks over time give a strong indication of what’s to come.  It is common to retain a very small area of central vision and only an unlucky few lose their sight completely; it seems Joy is going to be one of the unlucky ones.

RP is associated with more than 30 genes and even if neither parent has the disease it can still be passed onto a child if at least one…

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