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General Information

chILD Week

Children's interstitial lung disease (chILD) is an umbrella term which includes multiple different rare pulmonary disorders.  Although each of these disorders is rare, collectively there are many more patients than previously believed.  It is estimated that 0.13-16 patients per 100,000 people have chILD.(1)  Patients with these disorders often present with shortness of breath, increased work of breathing, chronic respiratory symptoms, low oxygen levels and difficulty gaining weight.

There are multiple different causes for chILD disorders including developmental/lung growth issues, genetic causes, environmental and infectious exposures, and systemic illness.   Sometimes the cause is unknown or cannot be discovered presently with current available diagnostic testing.  Because there are numerous disorders, which could present with the same symptoms, reaching a diagnosis is often complicated and requires multiple steps.  Unique classification schemes have been developed to better characterize and describe these disorders.  Expert consensus guidelines that detail the systemic and careful approach needed to diagnose these disorders have been essential in guiding care.

Unfortunately there is very little evidence in chILD t o inform and guide treatment decisions.  As a result, treatments are based on individual experience and expert opinion.  Treatment options in chILD require an understanding of the pathology of the specific underlying disease to avoid therapies that may be harmful or ineffective.  Supportive care is the hallmark of treatment consisting of management of gas exchange abnormalities, optimization of nutrition, mitigating other disease processes, minimizing infection risk with appropriate immunizations, multidisciplinary care, social work support, genetic counseling, and respiratory therapy/rehabilitation.

Within the field of chILD there is an urgent need for support of ongoing collaboration and therapeutic development. Expert physician networks have been established in the United States/Canada, European Union, and Australia with the ultimate goal of improving the care of children with chILD disorders.  Patient registries have been established by these networks and will be essential for further phenotyping patients and future recruitment for basic, translational and clinical research.

  1. Vece TJ, Young LR. Update on Diffuse Lung Disease in Children. Chest. 2016 Mar;149(3):836-45.

Four Facts About chILD

  1. Children's Interstitial Lung Disease (chILD) is not a single disease. There are over 30+ variations of this set of diseases that affect infants and children.
  2. The exact number of chILD cases is not known but it is estimated that there are around 5,000 cases in the United States, making it an "ultra-rare" disease.
  3. The severity of chILD varies with the diagnosis. Most patients will require oxygen therapy, but the amount needed and duration of treatment also varies.  Some will outgrow their symptoms while others will unfortunately require lung transplants to survive. Since these disorders are rare and newly recognized, very little is known about the best treatments or long term prognosis for these children.
  4. Because of the rarity and differences within chILD, there may be 10+ steps to diagnosis children that may have chILD,