EDS Nutrition
About
EDS Nutrition is a virtual private practice that provides personalized nutrition counseling. Most people with EDS have multiple concerns (constipation, GI discomfort, GI motility issues, persistent fatigue, etc.) that can be improved by modifications in diet and lifestyle. As a fellow zebra, it’s my mission to help other others feel better through nutrition.
EDS Healthcare in New York
The NYIT EDS/Hypermobility Treatment Center operates in Old Westbury and Central Islip, offering specialized rehabilitation and treatment. Mount Sinai South Nassau Chiari EDS Center in Oceanside focuses on EDS with Chiari malformation. Weill Cornell provides pain management expertise. New York Medicaid covers genetic testing with prior authorization. Wait times at major programs can be 6 months or longer.
Both EDS Centers of Excellence are on Long Island, leaving upstate New York significantly underserved. Patients in Buffalo, Syracuse, Rochester, and the Adirondacks face drives of 4-6+ hours to reach these programs. Wait times of 6 months or more are common. Rural upstate access is very limited, and telehealth is important for follow-up care.
Finding Nutrition / Dietetics for EDS
Ask whether the dietitian has experience with the EDS-related conditions that affect eating, including gastroparesis, MCAS food triggers, and SIBO.