In-depth Resource Information

If you or a loved one is diagnosed with an Interstitial Lung Disease, you may be overwhelmed with new information related to all of the testing and new treatments that might be prescribed.

You may have many unanswered questions about how this will affect your life, what to expect for the future, and how to deal with the symptoms of your lung problem or side effects of medications and other treatments. It is critical to have access to accurate information and support. There are many resources available to you and your family that provide accurate and supportive information.

Getting support and education is the key to living well with any chronic health issue.   There are ILD support groups across the United States that were meeting in person every month, however, due to the COVID-19 pandemic, groups are now meeting by Zoom, or online.  This has allowed patients who either don't have a group close by, or can't travel to the group meetings, to participate in support groups.  The easiest way to find an ILD Support Group near you is by going to the Pulmonary Fibrosis Foundation (PFF) website support group page and clicking on the list for either in-person groups, or online groups.  Some support groups are run by healthcare professionals, such as nurses, and others are coordinated by patients with ILD.  Groups typically meet monthly for a few hours to share experiences and support each other, as well as to obtain education and information.  Many groups invite speakers with expertise in various areas, such as clinical research, nutrition or exercise.   

Caregivers also benefit greatly from attending, even if the group is not made up solely of caregivers.  Living with and supporting someone with ILD can be stressful for family and friends.  Caregivers need to care for themselves as well.

Resources:

Pulmonary Fibrosis Foundation Support Group information

Family Caregiver Alliance

Stanford's ILD Support Group Annual Schedule (PDF)

“Our patients have so much more on their plate than just cough and shortness of breath. Dealing with health issues also brings life issues – work, insurance, finances, coping, mental health, family dynamics, and resource challenges to name a few. My role is to help people figure out how to make life work with their new normal.

- Kate Yablonsky, LCSW