Epidermolysis bullosa (EB) affects the skin's ability to withstand friction and trauma, causing painful blisters and sores that can limit mobility and quality of life.
I had theories, of course. Looking back, these tended to change quite frequently, and yet the fear was always the same: in short, that I was dying, that I had some dreadful and no doubt painful disease.
As a former gymnast, my life has been greatly affected by injuries from childhood sports, leading to surgeries and teaching my kids to listen to their bodies.
Despite moving to a standing desk and multiple rounds of tedious physio, I am no longer able to use my right arm without mind-bending pain, which obliterates any chance of creative focus for sustained periods.