Where can caregivers of people with tuberous sclerosis get support?

Taking care of someone with a long-term or chronic condition can be tiring and challenging and this is no different for parents or other caregivers of people with tuberous sclerosis. Caregivers of children with tuberous sclerosis have been shown to have lower physical and mental health-related quality of life scores. Caregivers need to take care of themselves as well as the person who has tuberous sclerosis. If you are a caregiver in need of support, try to take time for yourself, set aside time for personal counseling, or look for other resources at the Caregiver Action Network. This organization works to improve the quality of life for people who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. Support groups can also help provide support and advice for caregivers. Support groups for tuberous sclerosis include the Tuberous Sclerosis Alliance in the United States, the Tuberous Sclerosis Association in the United Kingdom and the Tuberous Sclerosis Canada Sclerose Tubereuse.

Other Questions About Tuberous sclerosis

• Will my child outgrow tuberous sclerosis?
• Who else in my family should I test for tuberous sclerosis?
• Where do I find other people with tuberous sclerosis?
• Where can I get financial help for tuberous sclerosis?
• Where can caregivers of people with tuberous sclerosis get support?