What more can be done to promote awareness of Children's Interstitial Lung Disease?

Question

Children's interstitial lung disease (chILD) is a term used to describe a group of rare diseases in infants and children. If chILD is suggested, efforts should be made to determine what type of chILD the child might have as different types of chILD have different long term issues that can be serious. This will require many tests. One thing is clear; chILD in infants and young children is different than in adults. A pediatric pulmonary doctor with expertise in chILD should be consulted.
An infant or child may have chILD if he or she has at least 3 of the following categories of problems without a known cause. Infants can have chILD from birth that rapidly progresses but older infants and children have these problems persistently for months.

1. Symptoms of abnormal breathing (cough, fast breathing, retractions, exercise intolerance)
2. Evidence for problems with oxygen (abnormal oxygen at rest, night or with exercise)
3. Abnormal chest Xrays
4. Presence of abnormal sounds

Answer 1

Unfortunately, you are waging an uphill battle. First, let me tell you I am an adult who is terminally ill with interstitial lung disease. As a youngster, it was believed I had asthma. Many children in the US have been diagnosed with asthma, but that diagnosis is incorrect. Many of these children actually have interstitial lung disease. The improper diagnosis comes from GP and FP physicians who do not have the expertise to diagnose interstitial lung disease. As a matter of fact, many adults are misdiagnosed as well. To obtain a proper diagnosis, a pulmonary specialist orders chest xrays, CT scans, and biopsies before a diagnosis is rendered and treatments begin.

In order to bring attention to your cause, you first need to educate the medical community and have them refer cases instead of providing incorrect diagnosis. Secondly, you are fighting asthma and cystic fibrosis charities (they get the most airplay). Your particular cause will take a backseat to these two charities until finite numbers are produced on how many children are affected and more importantly, how many die because of a lack of viable treatment.

The problem you face is the same as any other cause. People only have so much money to spend, and the charities that do the best job of promotion garner the most money. You could lobby the NIH and perhaps the American Lung Association to see if they may assist you in your work. The NIH provides valuable research dollars and the American Lung Association is supposed to help with all lung diseases. Good luck with your worthy cause, but don't hold your breath (no pun intented). I have been working for the past 3 years on getting word out for the Pulmonary Fibrosis Foundation (this disease kills 50,000 people every year in just the US alone) and still most people have never heard of it. Just keep fighting the good fight and if you end up educating just one person at a time, that's OK. That's better than no education at all.

Answer 2

I would do anything for my child... even if it means stripping down naked, standing on nails and catching myself on fire I would do it if it would help my son!