Family empowerment representatives are volunteers who provide emotional support, information, and resources to families affected by Rett syndrome. They are the first point of contact for families seeking help and guidance. Experts in the field have developed comprehensive care guides to help families understand the different stages and evolutions of Rett syndrome. These guides provide simple steps and tools to help children and families thrive.
Rett syndrome (RTT) is a neurological disorder that occurs almost exclusively in women. The prevalence of RTT in women is estimated to be between one in every 10,000 to 23,000 people, and it is found in all racial and ethnic groups. While RTT can occur in men, it is extremely rare. Recurrence in families is also very rare.
In these families, men may have a very different pattern, including miscarriages, premature death due to fatal encephalopathy, or other neurodevelopmental abnormalities. If you are looking for services and resources for people with Rett Syndrome in Fairhope, Alabama, there are several organizations that can provide assistance. These include the Alabama State Department of Education Transition Services, the Alabama Department of Senior Services, and the Alabama Disability Advocacy Program. The primary care guidelines for Rett syndrome offer suggested visiting times by clinical area of evaluation, specific concerns to consider, and deadlines for follow-up appointments.
Communication Guidelines is a book that provides parents, caregivers, communication professionals, therapists, school educators, and anyone else who interacts with or cares for their child with Rett syndrome access to the best information and strategies to facilitate their child's communication. As a result of research into Rett syndrome, doctors have acquired information about the growth patterns of Rett syndrome which should be used to interpret measurements of height, weight and head circumference. There are clinics that specialize in Rett syndrome that can help provide specific care for your child. The Nutrition Guide is a useful tool for improving the health outcomes of Rett syndrome as it provides information on nutritional options, potential difficulties that may arise with diagnosis, and resources to make the best decisions for your child.
The Rett Syndrome Handbook is a comprehensive book that covers everything from family problems to common problems, therapeutic pathways, and more. The Alabama Early Intervention System website (1-800-543-3098) serves children from birth to 36 months of age who have a medical diagnosis that may delay development. The Family Advisory Council supports state representatives, oversees the entire program, and makes recommendations about what the Rett community needs. Your child may be able to participate in studies and trials to advance the treatment and knowledge of Rett syndrome.
I also provide them with the contact information of their state representative for family empowerment - a person who has experienced Rett syndrome personally and who can listen to them carefully and make specific recommendations about resources in their home state.