Fight against the unknown: Young woman masters the Loys-Dietz syndrome

Fight against the unknown: Young woman masters the Loys-Dietz syndrome

Memphis, Tennessee, USA - A young American with an extremely rare genetic illness is fighting for her life: Kayley, a 20-year-old woman from Memphis, Tennessee, suffers from Loeys-Dietz-Syndrome (LDS), a disorder that was only identified about two decades ago. This disease, which affects around 4,000 people worldwide, affects the connective tissue, which is important for the stability of bones, muscles and organs. Serious consequences include clumps, instability of the joints, heart problems and structural malformations. Kayley describes her condition as "The Melting Disorder" because her connective tissue is so weak that it cannot keep your body as she explains in an interview with Special Books by Special Kids. Each step could lead to an aneurysm that can cause serious internal bleeding that make an immediate medical intervention necessary.

physical challenges and emotional stress

The health challenges of Kayley are enormous; Already 20 spinal operations have behind her and numerous metal sticks have been used to correct her serious scoliosis. Her weakened blood vessels have led to the formation of six aneurysms, which are distributed all over your body and can burst dangerously. Despite this shocking diagnosis, Kayley believes that her life expectancy of 37 years does not depict the whole truth. "Life expectancy is not a precise representation," she says, pointing out that the first average was the patient on average when the first discovery of LDS. This shows the sometimes misleading data on the disease that is still being researched. Inevitably she has experienced phases of depression and fights with the fear “not to have enough time.”

Nevertheless, Kayley's spirit remains unbroken. She is determined to make the best of every day and enjoy life. She emphasizes that she does everything to make optimal use of her time, even if that means being in the hospital frequently. Her story serves as an urgent example of the fight against a rare but extremely stressful disease, which not only brings with it physical but also emotional challenges, as . At the same time, the book about "dynamic diseases" addresses new perspectives on the medical challenges with which people like Kayley are confronted with, and how it deals with modern medicine, which is published in a publication at Springer is taken up.