Important Urgent information
For patients with Alström Syndrome admitted to the hospital or outpatient facilities, even if for routine minor surgery with anesthesia or sedation, it is vitally important that medical and nursing staff is aware that hypoxia (low blood oxygen levels) can occur very rapidly in patients with Alström Syndrome. In some patients, this has lead to life threatening heart/lung problems because of the reduced reserve capacity of the cardio respiratory system. Please inform your physician and medical team to use all precautions for monitoring oxygen saturation.
“LISTEN NUTRITION” – A YouTube recording on food and nutrition for young people with Alstrom Syndrome
Jamie’s Resource List for the Visually Impaired
We do not control or endorse the information presented on these Web sites. They are listed for informational purposes only.
ASI Executive Director
14 Whitney Farm Road
Mount Desert, ME 04660 USA
ASI Scientific Advisory Board
Clair Francomano, MD
Harvey Institute for Human Genetics/GBMC
6701 N. Charles Street, Suite 2326
Towson MD 21204 USA
Sibling Support Coordinators
Lynn and Cassie Johnston – Texas USA