The 8th Annual Kacy Wyman fun run/walk event took place Sunday May 4th. Once again, over 350 walkers/runners participated in the event and raised much needed dollars to find a cure for Kacy’s rare disease called Cystinosis. Thanks to about 37 pills a day Kacy leads an active life and is a true inspiration for our family and community.
Cystinosis is a rare disease that is typically diagnosed prior to age 2. Cystinosis is a genetic metabolic disease that causes an amino acid, cystine, to accumulate in various organs of the body. Cystine crystals accumulate in the kidneys, eyes, liver, muscles, pancreas, brain, and white blood cells. Without specific treatment, children with cystinosis develop end stage kidney failure at approximately age nine. Cystinosis also causes complications in other organs of the body. The complications include muscle wasting, difficulty swallowing, diabetes, and hypothyroidism. It is estimated that at least 2,000 individuals worldwide have cystinosis, though exact numbers are difficult to obtain because the disease is often undiagnosed and/ or misdiagnosed.
For more information visit www.cystinosis.org