Question:
My son is 36 and was diagnosed with an interstitial lung disease last year. We are going to a Lung Center in Philly, but I’d like to learn more about Down Syndrome and Lung Disease. Is there a support group that might be helpful?
Answer:
Interstitial lung disease is a term used to describe a variety of lung disorders that affect the lung tissue. These disorders are classified together because they are similar in terms of clinical presentation, imaging (x-ray, CT scan) findings, and the effect on the individual’s physiology and pathology (changes in the tissues). There are a variety of causes including occupational exposure, reactions to certain medications, radiation injury, connective tissues diseases, and pneumonias.
Individuals with Down syndrome are more susceptible to pneumonia. This is likely caused by immune system impairment, anatomical differences, and swallowing dysfunction in individuals with Down syndrome (Santoro et al., 2021). Recurrent lung infections such as pneumonia in people with Down syndrome have been linked to interstitial lung disease (van Allen et al., 1999). People with Down syndrome are also reported to have more co-occurring autoimmune disease. Autoimmune disease can cause connective tissue diseases (which are a cause of interstitial lung disease). However, there is little information in the literature regarding a link between interstitial lung disease and autoimmune diseases in people with Down syndrome. Kapur et al. (2014) described one case of an autoimmune disorder causing interstitial lung disease in a child. I could not find any cases reported in adults with Down syndrome in the medical literature.
Unfortunately, I am not aware of a group specifically for people with Down syndrome and their families related to interstitial lung disease. When searching this online, I did find several organizations and health care systems that have support groups for people with chronic lung disease. I recommend asking the question of the Lung Center where you son will be seen. They may have a group of their own or know of a group to which some of their patients belong that they would recommend.