From eating healthy and exercising to finding accurate information, here’s what you need to know.
More than half a million people are diagnosed with interstitial lung disease, also called ILD, each year. A diagnosis of ILD, which is an umbrella term for more than 200 conditions, can – understandably – feel daunting. However, the medical community has made significant gains in the treatment of ILD over the last two decades. Doctors want you to know that you can live well, despite such a diagnosis.
“We want patients to be able to live their fullest life, however they define that.”
“First and foremost, we want patients to be able to live their fullest life, however they define that,” said Dr. Lisa Lancaster, a pulmonologist and director of the ILD Program at the Vanderbilt Lung Institute. “We want to fit that with their personal goals of care when possible.”
Managing other conditions alongside ILD
If you have other conditions, Lancaster said, managing them is important. “See your primary care doctor and take care of your heart and any other medical problems you may have,” she added. “Those may also cause shortness of breath or limit life. So we want to make sure we aren’t neglecting other problems.”
Conditions that often co-occur with ILD include reflux, sleep apnea, pulmonary hypertension, coronary artery disease, and more.
“Wear oxygen if you need it,” Lancaster added. “You will not need it more if you wear it. You will not become dependent on it. You either need it or you don’t.”
Lifestyle changes for managing ILD
For everyone, but especially people with ILD, engaging in physical activity is crucial. “There are programs to help patients who are short of breath stay active,” Lancaster said. “Those include pulmonary rehab and online rehab programs.” Lift Functional Fitness is an example. “People can have access to exercise in their living room through these online services,” she added.
“People can have access to exercise in their living room through these online services.”
Eating a healthy diet is also important. “We don’t have data suggesting that one particular diet is better than another,” Lancaster explained. However, she recommended a heart-healthy diet in general. As much as possible, avoid ultra-processed foods, which tend to be high in additives and added sugar. These added ingredients can drive inflammation.
Seek support for ILD
Talk to your family and friends about what you’re going through, recommended Lancaster. “There are also support groups nationally and internationally.” Check out the Pulmonary Fibrosis Foundation for a list of groups close to you.
PF Warriors serves as an online international option. “They’re open to anybody with interstitial lung disease. Various autoimmune disease societies also have support groups that may be beneficial, especially if your ILD is related to a specific autoimmune condition.
Stick to accurate and reliable information
Lancaster included a caveat regarding other online information. “Talk to your doctor about reliable sources,” she said. Plenty of people are blogging about their condition, but blogs aren’t necessarily always evidence-based or accurate.
“Talk to your doctor about reliable sources.”
Another issue is that people do tout and sell supplements online to treat ILD. “Beware of that,” Lancaster said. “We don’t have data on that yet.” Some centers sell stem cell therapy, but again, Lancaster said, no evidence supports this type of therapy for ILD. “The cost is enormous, and they promise things that are not proven,” she added. The Pulmonary Fibrosis Foundation has written a warning letter on this topic.
The Pulmonary Fibrosis Foundation hosts a meeting every two years, with in-person and online options for researchers, providers, patients and care providers, Lancaster said. This is a great opportunity for patients and caregivers to learn accurate information.
Help for ILD
Vanderbilt Health’s Interstitial Lung Disease Center offers comprehensive care with pulmonologists who have the expertise and experience to accurately diagnose your condition and develop a care plan personalized for you.