Jessica Jondle has a rare disease called cystinosis. Until relatively recently, this disease was almost entirely limited to children, and Jessica has had her fair share of ups and downs as she lives with a condition that was supposed to limit her life to ten years. In people with cystinosis, a toxic amount of the amino acid cystine builds up and destroys cells, causing organ failure. Jessica wrote the book Roller Skating with Rickets and Other Paradoxes of Life with Genetic Disease in order to communicate her experiences and offer hope to others living with rare conditions. From the long road to diagnosis of her mystery condition at the age of 22 months and experimental treatments and their multiple side effects to the humorous attempts at “fitting in,” Jessica relates a series of paradoxical vignettes with a life lesson – intended to uplift those who might feel beaten down by life’s challenges – attached to each. As a kidney transplant recipient who is currently fighting the non-renal effects of her disease (including muscle wasting and the threat of blindness), she also hopes to raise awareness for both organ donation and rare diseases such as cystinosis. All proceeds from book sales will go to cystinosis research.
For more information visit: www.rollerskatingwithrickets.com