PHILADELPHIA, April 23, 2014 /PRNewswire-USNewswire/ -- Isolation, confusion and fear characterize the experience of children in a family where mom or dad has been diagnosed with frontotemporal degeneration (FTD), a rare, young-onset dementia. A new website, www.aftdkidsandteens.org, goes live this month to provide a lifeline for children and teens in affected families.
Olivia Goldring was just 8 years old when her 45-year-old mother was diagnosed with FTD. The disease had crept up on the family, changing her mother's ability to manage normal daily life involving work, a husband, a home, and two young children. It was a confusing time for everyone. "She changed," Olivia recalls. "She started looking and acting different than all the other moms. I was upset and embarrassed. And then I would feel ashamed and guilty because I felt embarrassed. I just didn't know how to deal with all of these emotions."
The AFTD Kids and Teens website provides answers and support for young families who face the challenge of guiding their children through normal stages of maturation—even as one of the parents regresses along the same path. The website provides age-appropriate information about the disease and addresses the changes it brings about in the rhythm of family life: chores, carpools, inviting friends over. Most importantly, it empowers children to cope with the questions and isolation that this journey brings, as they are forced to grow up much faster than their peers.
A special section of the site titled "Kids (or Teens) Like Me" provides an opportunity for the children to submit poems, artwork, essays or videos to share their story and feelings. And "Get Involved" is a place where they can post pictures and messages about their efforts to spread awareness or raise money to develop the first treatments for this disease. In her self-recorded video Olivia provides affirmation and support for her peers. "It's not your fault," she says in the video. "It's important to find people—friends, adults—you can talk to so you don't feel alone. Because you're not alone."
Frontotemporal degeneration, or FTD, is a disease that affects the frontal and temporal lobes of the brain. It causes changes in behavior and personality, language and/or motor skills and an inevitable deterioration in a person's ability to function. FTD is often diagnosed in the 40s and 50s, when a person is actively parenting and nearing the height of his or her career. This younger age of onset means that FTD affects families at a much different stage than common types of dementia, like Alzheimer's. Families like the Goldrings face emotional, financial and support challenges that our current societal resources do not address.
The Association for Frontotemporal Degeneration (AFTD), a 501(c)3 nonprofit based in Philadelphia, is the only national organization devoted to funding research, educating medical professionals and creating unique resources to support families living with FTD.