Rett Syndrome (RTT) is a rare neurological disorder that affects mainly women, with a prevalence of one in every 10,000 to 23,000 people. It is characterized by normal early development in the first year of life, followed by regression, leading to severe disabilities at three years of age. People affected by Rett Syndrome should be regularly monitored for scoliosis (curvature of the spine) and heart problems. If you or someone you know is living with Rett Syndrome in Fairhope, Alabama, there are a number of organizations that can provide services and support.
Family empowerment representatives are volunteers who offer emotional support, information, and resources to families affected by Rett Syndrome. The International Rett Syndrome Foundation is dedicated to patient advocacy; they promote family and professional education; provide referrals to support groups, genetic counseling and other services; and promote legislation that benefits affected individuals and families. The University of Alabama at Birmingham (UAB) is one of 15 institutions in the United States awarded the designation or redesignation of the Center of Excellence of the International Rett Syndrome Foundation. UAB's Ability Clinic provides physical therapy, occupational therapy and speech therapy services, and has treated many children with Rett Syndrome and are familiar with their unique needs.
The Alabama Disability Defense Program (ADAP) provides legal services to Alabamans with disabilities to protect, promote and expand their rights. The Alabama Health Insurance Premium Payment Program (ALHIPP) reimburses monthly health insurance premiums to families who have a private or employer health insurance plan as their children's primary insurance and use Medicaid as secondary insurance. The Alabama State Department of Education Transition Services provides tips and resources for caregivers, University of Alabama School of Law free law clinics, probate in Jefferson County, choosing between guardianship and trusteeship. The Alabama Division of Motor Vehicles issues disability plates and signs.
Visit their website for more information on how to apply. The Birmingham Zoo, Birmingham Botanical Garden, Birmingham Science Center McWane Science Center Practical Museum for Children at Tuscaloosa-Alabama Safari Park in Montgomery/Huntsville Botanical Garden are all great places to visit with your family. The Food and Drug Administration (FDA) approved a new drug, trophinetide, to treat Rett Syndrome in children aged two years and older. Consider participating in a clinical trial so that doctors and scientists can learn more about Rett Syndrome and related disorders.
Today, many families must travel a full day to see a doctor who knows about Rett Syndrome. Every public high school in Alabama has a virtual reality counselor assigned to provide transition services. A virtual reality counselor works with young people and their families to assess their needs and plan individualized services to meet their chosen vocational goal. Although Rett Syndrome is a genetic disorder, less than 1% of registered cases are transmitted from one generation to the next.
Some researchers suggest that the specific type of mutation in the MECP2 gene affects the severity of Rett Syndrome symptoms. If you or someone you know is living with Rett Syndrome in Fairhope, Alabama, there are many organizations that can provide services and support. The continued recognition of UAB as a leader in Rett Syndrome care will make it the go-to clinic for local families and will help educate other doctors about Rett Syndrome care.
