Caring for a child with TSC, or living with TSC yourself, can be challenging. There is much to learn about the disorder, from the wide range and variability of its symptoms, to the lifelong monitoring and medical care required to manage these symptoms. TSC's effects also typically change with age, making the disorder unpredictable. Not knowing what to expect can be unsettling and at times overwhelming. This page provides information about resources and strategies that may help to demystify TSC and help you create a network of support for you and your family.
Managing Medical Care
Finding the right doctor or team of health care providers knowledgeable in the manifestations of TSC is essential. (For more information, see Medical Care.) For many, an important member of this team is a social worker. This licensed professional can provide support, and also help coordinate medical care and assist you in gaining access to the services you or your family may need.
The TS Alliance is another valuable resource. The TS Alliance Web site has a physician referral list and a list of TSC clinics that are located throughout the country. They also publish a number of valuable online resources. The Web site offers downloadable life stages guides that describe TSC's most common effects from infancy through adulthood, journals in which people with TSC and their families can keep track of medical records and appointments, and a number of information sheets that TSC families can print and share with physicians, other family members, teachers, or anyone who might benefit from a greater knowledge of TSC. For more information, visit the TS Alliance Web site.
It is not unusual for individuals with TSC and their families to feel a sense of isolation. Connecting with other people who share your diagnosis, or with families who are having similar experiences, can be comforting and helpful. A genetic counselor, social worker, or physician may be able to offer names of other families who are willing to talk with you. The TS Alliance also helps people with TSC and their families connect with others who are affected by the disorder through local support groups and online discussion groups. In addition, the TS Alliance has regional and national events where families and providers gather to share personal stories and information about TSC, such as research and treatment options. For more information, visit the TS Alliance Web site.
Siblings and Parents
Having a child with TSC can put a lot of pressure on a family, especially if the child has serious medical, learning, or behavioral difficulties. Because a child with TSC can require so much attention, it is not uncommon for parents to inadvertently overlook unaffected siblings. Finding adequate time for the unaffected siblings may be difficult, but is essential to helping them develop psychologically and cognitively. It can also help them to understand TSC and to accept their role as the sibling of someone who has the disorder. SIBS Encounter is a great online resource for siblings of children with TSC and other disabilities.
It is also important for parents to take care of themselves, to get the support they need, and to allow time for each other. Creating and maintaining a network of family and friends who can help with such things as childcare and transportation can alleviate some of the burden that parents and siblings of people with TSC carry.
Because of the variability of TSC, each person's experience with the disorder is different, as are the strategies families use to manage the various aspects of TSC. The family stories and other pages on this site may provide insight as you develop personal strategies for yourself and your family. For example, Laurie's family has developed strategies to help compensate for her cognitive limitations, and Brad's housemates and therapists have helped him develop strategies to deal with his anxiety and depression.
A common theme that arises for many individuals with TSC is the need for structure. People with TSC often have difficulty transitioning from one activity to another. They may also be uncomfortable with a change in daily activities. Developing consistent family, household, and school or workplace routines, and helping an individual with TSC anticipate transitions, can lessen the severity of these challenges.
The following is a list of Web sites that provide support and educational materials about TSC and its various manifestations.
The TS Alliance provides education, support, and awareness for people affected by TSC, as well as funding for TSC research.
The Tuberous Sclerosis Association (UK)
The Tuberous Sclerosis Association offers support for people affected by TSC in addition to promoting awareness and providing educational information.
Tuberous Sclerosis Canada
Tuberous Sclerosis Canada is dedicated to providing education, support, and awareness about TSC, and promoting TSC research.
National Alliance for Autism Research
The National Alliance for Autism Research provides information about autism and funding for autism research.
National Autism Association
The National Autism Association provides education for families affected by autism and other neurological disorders.
Epilepsy.com is an educational resource for individuals and families affected by epilepsy.
The Epilepsy Foundation provides education and advocacy for people affected by epilepsy.
Genetics and Genetic Counseling
Athena Diagnostics lab provides molecular diagnostic testing for neurological disorders including tuberous sclerosis complex.
The GeneTests Web site is used by genetic counselors and geneticists and provides current information on genetic testing and genetic services.
Genetics Home Reference
The Genetics Home Reference Web site is a service of the U.S. National Library of Medicine. It provides a guide to understanding genetic conditions.
National Society of Genetic Counselors
The National Society of Genetic Counselors can help families locate a genetic counselor in their area.
American Kidney Fund
The American Kidney Fund provides education about kidney disease and financial assistance to kidney patients in need.
National Kidney Foundation
The National Kidney Foundation provides information about kidney disease and kidney transplantation. (There may also be a regional office in your state.)
The Arc is an international organization for individuals with developmental disabilities.
Federation for Children with Special Needs
The Federation for Children with Special Needs provides information, support, and assistance to parents of children with disabilities.
Learning Disabilities OnLine
Learning Disabilities OnLine is a resource for parents, teachers, and other professionals who care for or work with people with learning disabilities.
Misunderstood Minds is a PBS Web site and video series that provides information about learning disabilities and explores the personal stories of five children who have them.
U.S. Department of Education
The U.S. Department of Education has resources for parents of children with special needs.
The LAM Foundation provides education and support for women with lymphangioleiomyomatosis (LAM).
SIBS Encounter is a Web site for siblings of children with TSC and other disabilities.