Welcome to our website dedicated to teens and adults with Silver-Russell syndrome (SRS). We understand that the challenges faced by adults with SRS differ significantly from those experienced by children, which is why we’ve created this resource specifically for older individuals.Silver-Russell syndrome is a rare genetic disorder affecting approximately 1 in 35,000 to 100,000 people. It’s characterized by several key features:
- Delayed growth and low body mass index (BMI)
- Relatively large head size compared to body
- Triangular facial appearance with a prominent forehead
- Body asymmetry
- History of significant feeding difficulties in childhood
While these are common traits, it’s important to note that SRS manifests differently in each individual. Some may have many characteristics (severe phenotype), while others may have very few (mild phenotype). Despite physical differences, most people with SRS have normal intelligence.Genetically, SRS is complex. About 60% of cases involve abnormalities on chromosomes 7 and 11. However, in the remaining 40% of clinically diagnosed cases, the underlying genetic cause remains unknown.As you navigate life with SRS, remember that you’re not alone. This website aims to provide information, support, and resources tailored to the unique experiences of teens and adults living with Silver-Russell syndrome. Whether you’re seeking medical information, lifestyle advice, or simply looking to connect with others who understand, we’re here to help you thrive.
