If you or someone close to you is living with Rett Syndrome (RTT) in Fairhope, Alabama, it is important to be aware of the resources available to help. RTT is a neurological disorder that primarily affects women, with a prevalence of one in every 10,000 to 23,000 people. Although it is possible for men to be affected by RTT, it is extremely rare. Symptoms of RTT include stagnation or regression of communication skills, stereotypical hand movements, gait disorders and a decrease in the growth rate of the head. It is essential to receive an accurate diagnosis in order to receive quality treatment.
Parents are strongly encouraged to have their child evaluated by a medical professional using agreed clinical criteria and clinical severity scales. Recent research has revealed that RTT is a developmental disorder rather than a progressive and degenerative disorder as previously thought. This means that individuals with RTT can now expect to survive into adulthood, barring other illnesses or serious physical complications. If you have been sexually assaulted, it is important not to bathe, shower, change clothes, eat, drink, use mouthwash, or brush your teeth until you have received medical attention. Doing so could destroy or damage valuable evidence.
The HelpLine Rape Response program offers support, information and assistance in seeking compensation from victims as well as a safe space to express the pain, fear and betrayal that sexual abuse causes. Crisis Services of North Alabama provides support for individuals and families in crisis. If you feel vulnerable or have suicidal tendencies or are worried about someone else's wellbeing, call 988 - the national number for all mental health, substance use and suicide crises. For more information on this lifesaver, visit the Alabama Department of Mental Health. The UAB Rett Center and the Rett Syndrome Clinic can provide information about services and resources for people with RTT. Contact Jane Lane, RN, BSN (20) 638-6878 for more information.
The Alabama Disability Defense Program (ADAP) provides legal services to Alabamans with disabilities to protect, promote and expand their rights (1-205-348-4928). The Alabama Early Intervention System (EIS) serves children from birth to 36 months of age who have a medical diagnosis that may delay development (1-800-543-3098). Family empowerment representatives are volunteers who provide emotional support, information and resources to families affected by Rett syndrome. United Ability's Ability Clinic provides physical therapy, occupational therapy and speech therapy services and has treated many children with RTT. Accelerate full-spectrum research to cure Rett syndrome and empower families with information, knowledge and connectivity. The purpose of this study is to advance the understanding of the natural history of Rett syndrome (RTT), MECP2 duplication disorder (MECP2 Dup), RTT-related disorders such as CDKL5, FOXG1 and people with MECP2 mutations who do not have RTT.
Your child may be able to participate in studies and trials to advance the treatment and knowledge of Rett syndrome.