ILD and Sarcoidosis Support Group

About Support Group

The University of Florida ILD And Sarcoidosis Support Group was started in 2018 to give patients from our region and state an opportunity to learn more about their disease, develop skills to build resilience, connect with other patients and interact with specialists from the UF ILD and Sarcoidosis clinic. Each meeting, we have a guest speaker who presents a topic and takes questions from the members of the support group. Guest speaks have included: lung transplant doctors, gastrointestinal specialists, experts in oxygen therapy, representatives from the pulmonary fibrosis foundation, research coordinators, and during the COVID-19 pandemic, infectious disease experts. We have also had a couple of sessions on pulmonary exercises that encouraged audience participation.

Since the pandemic began, our support group has moved online and is accessible through a Zoom link that you receive to your email. The link is also provided below under the heading “Next Support Group Meeting”. This allows you to participate from the comfort of your home. If you are interested in joining the support group please contact Support Group Coordinator, Kayley Hamilton.

NEXT SUPPORT GROUP MEETING: TBA

*Due to the COVID-19 Pandemic, all will be held virtually until further notice.

Recorded Support Group Meetings

• Support Group Discusses COVID-19 Vaccine – January 27, 2021
• Support Group Discusses ILD and Oxygen Therapy – August 26, 2021
• Support Group Discusses Pulmonary Rehabilitation – September 30, 2021
• Support Group Discusses COVID-19 Variants and Vaccines – October 29, 2021
• Support Group Discusses Patient and Caregiver Experience – January 27, 2022
• Support Group Discusses Pulmonary Function Tests – March 24, 2022
• Del Webb Stonecreek – “Why Can’t I Catch My Breath?” – April 6, 2022
• Support Group Discusses Pulmonary Rehab – May 12, 2022
• Support Group Discusses Lung Transplant – June 2, 2022
• Support Group Discusses Pulmonary Fibrosis – October 5, 2022
• Support Group Discusses Tai Chi for ILD – November 3, 2022
• Support Group Discusses Sarcoidosis – April 24, 2023
• Myositis Multidisciplinary Meeting and Support Group – May 25, 2023
• Support Group Discusses Palliative Care– August 17, 2023

Other Resources for Patients

Life with Pulmonary Fibrosis:

PFF Webinars:

• Exacerbations and Emergencies
• Symptom Management for Pulmonary Fibrosis
• Coping with Uncertainty: Building Resilience and Hope through Writing, Reflection, and Self-Care
• Cough 101: An Overview of Cough in Pulmonary Fibrosis
• Getting the Most Out of Portable Oxygen to Stay Active
• Sorting through Advance Directives: What Do I Need to Have in Order?

Sarcoidosis:

• www.stopsarcoidosis.org
• Stop Sarcoidosis – Videos