Rachel Lee Advocacy & Umi
About
RLA & Umi (Unbounded Movement Intelligence) seeks to bring EDS and HSD patients and their caregivers the hope and courage to face the daunting task of living with these conditions. My specialty is complex cases and those in acute states who have been unable to find specialists to accurately diagnose the presenting symptoms. To aid in this effort I spend as much time as each client needs to help sort through confusing, difficult symptoms, find providers, and help prepare to meet those providers with confidence. From communication dynamics and medical organization to life coaching with chronic illnesses, disability and evidence based educational resources for growth, self-advocacy and peace of mind, my vision is to help create a bridge between patients and their physicians that turns years of struggle into years of recovery, stability and a path forward. (I work with clients of all backgrounds, identifications and spiritualities).
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 Other for EDS
Mention your EDS diagnosis at the start of any appointment so the provider can factor connective tissue fragility into their evaluation and treatment approach.