Karen Gledhill is a founding member of the Adult Leadership Advisory Board of CRN. She spent her life in advertising and is a retired production manager for a local advertising agency. She became bored in retirement, and pre-COVID, worked as office manager, and currently in a kindergarten after- school program. In 1981, at age 25, Karen was diagnosed with kidney failure, her kidneys at 15% function. When it came time for dialysis, family members began donor-testing, including her sister in California , whose test showed that she had only 40% kidney function. It was a MIRACLE that the pathologist who examined her biopsy tissue was alert and found cystine crystals. She was told she had something called Cystinosis. Since Karen’s sister lived in CA., she was sent to see Dr. Schneider, who after testing, confirmed Cystinosis and put her on cysteamine. Karen’s nephrologist did not even know about the disease and had to search for information. Her biopsy slides were re-checked and a bone marrow test done to confirm, she too, had Cystinosis. Crystals had been found in both women’s eyes as far back as 1963, but, the ophthalmologist did not know what they were. Karen is now 38 years post-transplant (for her first transplant, she participated in research with the experimental drug, cyclosporin. That deceased-donor kidney lasted 26 years, and now her second transplant is 12 years old).
Karen started volunteering for the National Kidney Foundation after her diagnosis, and continued to do so for 40 years, as well as becoming involved with organ and tissue donation groups, and patient organizations. She has spent her adult life volunteering for organizations; talking to classes, groups, health fairs, trade shows; talking to potential transplant patients and volunteering at the hospital. She served two terms on the Cystinosis Research Network board of directors.