The LDSF Board of Directors is in the process of developing a series of materials to help in navigating the LDS Journey. Teams of volunteers were assembled at the end of 2012 with a goal of presenting new resources for our community in 2013. Groups are currently helping to create essential resources regarding the LDS journey at various age levels. Current projects include “Where to Start?” , “Transitions” and “Growing Older With LDS.”
Our friends at the Genetic Alliance recently share the following that may benefit our community as well:
As young adults with special healthcare needs get older, it’s important for them to think about how their health and healthcare needs may change. Throughout the transition from the pediatric healthcare system to the adult healthcare system, it is important young adults with special healthcare needs continue to receive the services and care they need. The critical process of healthcare transition may take many steps over several years as young adults figure out and begin to manage and advocate for their own health and care.
Being a Healthy Adult: How to Advocate for Your Health and Health Care provides information for young adults with disabilities on advocate for their own health and healthcare needs. It provides examples of situations in which young adults can speak up about their needs, including tips for young adults on interacting with their physicians.
Journey to Adulthood: A transitions travel guide from the National Health Care Transition Center provides teens with questions to ask and answers to questions they may have as they plan for the transition process.
Informationen på denna sida och dess undersidor är med deras tillstånd, direkt hämtade från Loeys-Dietz Syndrome Foundation i USA. Sidorna kommer att översättas till svenska efterhand, men tills dess väljer jag att presentera all information på originalspråket.