“I have come to realize that there are other families out there that are struggling with similar issues. I recognized there was a need for a 24/7 Caregivers Group to help and support each other.”

-Lori Kobular, mother of a woman with TS

Each individual with Turner Syndrome (TS) is unique, and some have complex needs that require long-term, 24/7 care. This could be for a variety of physical, behavioral, developmental, or emotional reasons. This circumstance often presents a challenge not only for the individual with TS, but also for their caregiver(s).

The 24/7 Caregivers Group aims to provide peer support for caregivers of these individuals. Caregivers are able to provide the best support possible for their loved one when they, themselves, are cared for. This group is for caregivers to share experiences, ask questions, express concerns, and learn in a safe, accepting space.

About Lori

Lori is the mother who advocated for the creation of this group. Her story explains the need for additional support for these caregivers.

“My name is Lori, and this is my 33-year-old daughter with TS, Julie. We found out that Julie had TS at six weeks old. We had a very difficult time finding the necessary support and information to navigate the obstacles involved. Julie has multiple disabilities, including a learning disability, a developmental disability, and behavioral issues. She lives in a group home and will for the rest of her life.

We went to a TS support group when Julie was a baby; however, we found the meetings were depressing for us, since Julie had so many issues. It has taken me a long time to come around to opening up about Julie and what our life was like. But I have come to realize that there are other families out there that are struggling with similar issues. I recognized there was need for a 24/7 Caregivers Group to help and support each other.”

Sign Up for 24/7 Caregivers Group

Are you a caregiver of a low-functioning individual with TS who cannot mainstream or function independently, or who requires emotional, physical, and medical supervision 24/7? You can sign up to join the group by completing the form below. Once we receive your application, we will send an invitation to join our private Facebook group.

Written by Liz Carmines. TSF Program Development Coordinator, and edited by Susan Herman, TSF volunteer blog post editor and translator.

For more information about caring for someone with Turner Syndrome, click here.