Breathtakers

Supporting sufferers of Obliterative Bronchiolitis and other Rare Lung Disease

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What is OB?

Obliterative Bronchiolitis (OB) is a rare and currently irreversible lung disease that occurs in children and adults after injury to the lower respiratory tract. The small airways in the lungs become inflamed and scarred and this can often progress to obstructive lung disease. As the small airways are no longer working properly the patient developes a chronic cough, prolonged wheeze, shortness of breath and is unable to maintain any prolonged exercise. OB can be caused by infection, pneumonia (particularly with virus's called adenovirus and mycoplasma), breathing in toxic fumes, drugs and inhaling food or fluid into the lungs (chronic aspiration). It also can happen after lung, heart and bone marrow transplants.
 
Treatment

Treatment of OB is mainly supportive using antibiotics and physiotherapy plus oxygen therapy, if the patient requires it. Many patients are treated with inhalers (sometimes steroids) with variable results. There have been no published results of any research or treatments for OB.  Surgery may be an option for a small number of patients with severe localised disease and lung transplantation is an option in end-stage disease. The clinical course is very variable and the prognosis for any individual is often difficult to predict.


What is Interstitial Lung Disease?  
Though Breathtakers is intended primarily as a support group for OB much of the information on the support pages is generic and therefore may prove useful for sufferers of other rare lung disorders. As with OB there is little available information or support for other rare lung disease so hopefully this site may prove useful.
 
Children's Interstitial Lung Diseases (cHILD)
Children's Interstitial Lung Disease (chILD) is a group of rare lung diseases found in infants, children and adolescents. Many of these diseases can present with similar symptoms; this set of symptoms has been called the chILD syndrome. The diseases are very different though, and severity of disease and long-term outcomes vary.

Does ILD affect adults?
Adults can also suffer from ILD. The most common and severe form is interstitial pneumonia/ idiopathic pulmonary fibrosis, which has not been found in infants and young children. The term "Idiopathic Pulmonary Fibrosis" however means scarring of the lungs for unknown reasons, which can occur in children.

What are some of the forms of chILD?
· Surfactant Protein Deficiency (several subforms of this exist as well)
· Chronic Bronchiolitis
· NeuroEndocrine Hyperplasia of Infancy (NEHI) also known as Persistent Tachypnea of Infancy
· Hypersensitivity Pneumonitis (HP)
· Connective Tissue Lung Disease
· Bronchiolitis Obliterans (OB)
· Bronchiolitis Obliterans Organizing Pneumonia (BOOP)
· Pulmonary Interstitial Glycogenosis (PIG)
· Growth Disorders
· Development disorders such as Alveolar Capillary Dysplasia (ACD
 
Useful Links for ILD
 
 
 
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